Yo Mamma Mamma!

Transitions from one activity to another

2011-11-05T12:21:00.000-07:00

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...

Question:

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. :)

Teaching Colors to My Visual Learner

2011-06-14T19:03:00.000-07:00

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.

Tins:

Red Contents:

Yellow Tin

Blue Tin

Posters:

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!)

Video

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:

And Box of Crayons:

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.

Books:

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.

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...

A Wonderful Old, But New to Me, Poem

2011-06-03T13:11:00.000-07:00

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.

My Favorite Posts for New Moms with Kids with Down Syndrome

2011-05-22T12:25:00.000-07:00

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 up...click 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 signing, spoon 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!

Links to Birth-5 Down Syndrome Education Articles

2011-05-20T18:59:00.000-07:00

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 (http://www.dsfoc.org/learning_program_registration.php). 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
http://www.down-syndrome.org/information/development/overview/

Overview - Birth – 5
http://www.down-syndrome.org/information/development/early/

Motor Skills -Overview
http://www.down-syndrome.org/information/motor/overview/

Speech and Language- Birth – 5http://www.down-syndrome.org/information/language/early/

Reading and Writing- Birth – 5http://www.down-syndrome.org/information/reading/early/

Number Skill Development- Birth – 5http://www.down-syndrome.org/information/number/early/

Social Development (overview only)
http://www.down-syndrome.org/information/social/overview/

Memory Skills (overview only)
http://www.down-syndrome.org/information/memory/overview/

Family Issues (overview)
http://www.down-syndrome.org/information/family/overview/
Education Issues (several)
http://www.down-syndrome.org/information/education/

Enjoy!

The Prom King and Queens With Down syndrome

2011-05-14T05:44:00.000-07:00

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.

http://news.cincinnati.com/article/20110513/NEWS0102/105140335/

And a few others:
http://www.kmph.com/story/14419646/student-with-downs-syndrome-crowned-prom-king?redirected=true
http://www.tampabay.com/news/humaninterest/mitchell-high-students-elect-student-with-down-syndrome-as-their-prom-king/1163366
http://www.youtube.com/watch?v=jlp2dlHjO24
http://www.sj-r.com/opinions/x1274030419/Letter-Proud-of-Auburn-students
http://www.newstribune.com/news/2011/may/10/north-callaway-seniors-choose-their-biggest-fan-pr/
http://glasgowdailytimes.com/local/x528362945/Crown-a-symbol-of-acceptance
http://stlouis.cbslocal.com/2011/04/14/illinois-special-education-student-wins-prom-queen/

This one is from last year, but she's too darling not to post!
http://www.safetynetsource.com/2010/06/11/students-cast-nearly-unanimous-vote-for-prom-queen-with-down-syndrome/

Long Live the King and Queen!

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

2011-04-22T11:10:00.000-07:00

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!

http://downsyndromepregnancy.org/diagnosis-day-parents-what-would-you-say-to-your-past-self/

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.

New Dreams...

2011-04-02T09:47:00.000-07:00

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?

IEP Resources and Videos

2011-03-03T15:56:00.000-08:00

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

http://www.wrightslaw.com/info/advo.fruitcake.power.htm/

A few other favorite resources:

http://thebalsisfamily.blogspot.com/2011/03/inclusion-and-access-to-general.html

http://righttolearn.blogspot.com/2010/04/special-education-acronyms.html

http://communicationskillsforlife.files.wordpress.com/2010/08/iep-toolkit.pdf

http://www.myspecialks.com/2011/05/iep-tips-part-1.html
http://www.ndsccenter.org/?page_id=751

http://www.ndsccenter.org/?page_id=754

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

A New and Improved Down Syndrome Baby Center Blog Roll!

2011-02-02T19:39:00.000-08:00

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, please...here is our Blog Roll!

www.ailtsfamily.blogspot.com , 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.

www.alyssasblessings.blogspot.com 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.

www.amysramblingsandreflections.blogspot.com/ Amy, AmysMiracles
SAHM to three, our youngest diagnosed with DS post-natally. Blog about family and raising children with and without designer genes.

http://www.anextra21.blogspot.com/ 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.

www.audribeth.blogspot.com/ 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!

http://www.babynumber10.blogspot.com/, 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.

www.billandria.blogspot.com/ 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.

www.blessingsandglory.wordpress.com/ 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.

www.bloggerssyndrome.blogspot.com/ Carolyn, kiwiaussie

www.charlotte0609.blogspot.com/ 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.

www.doozeedad.blogspot.com/ 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.

http://www.downsyndromepregnancy.org/ 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.

www.downsyndromeupupupandaway.blogspot.com/ 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.

http://www.ellietheurer.blogspot.com/ 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.

www.gardenofmyheart.wordpress.com/ 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.

www.gettingdownwithnate.blogspot.com/ Crista, VTMommaBean

www.hapagirlhapafamily.blogspot.com/ Sonia, navywifemomof3

www.itsgooditsbaditsugly.blogspot.com/ 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.

http://www.jaimeharman.blogspot.com/ Jaime, jt1982
A blog about a lesbian family waiting for their son to be born. He was diagnosed with down syndrome at 21 weeks.

www.jillellingson.wordpress.com/ Jill, LadyEowyn

www.johnsonfamilygrind.blogspot.com/ Alainasparents

www.justjackjack.blogspot.com/ Brandi, michaelandbrandi

http://www.kaetlynskorner.blogspot.com/ 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.

www.kateandkylee.blogspot.com/ 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.

www.kelly-47piecestolove.blogspot.com/ Kelly, kellymaureen622
Full-time working mom of 3 children (one in heaven and one with DS) and all the craziness that comes with it!

http://www.kwqr.blogspot.com/ Kate, zilkakatt
Keeping up with Quinnlan & Remy - tales of two brothers, their many adventures, and the parents who are lovin' every minute of it.

http://www.lankfordlegacy.blogspot.com/ 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.

http://www.littleliamburns.blogspot.com/ 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!

http://www.lovingmyaustin.com/ 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.

www.mamamommyme.blogspot.com/ Meriah, doozee

www.missfancypants.wordpress.com/ 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.

www.mooscrossing.blogspot.com/ Melissa, Lallybroch

http://www.mostlytruestuff.blogspot.com/ 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.

www.muslimmamadsblog.blogspot.com/ Stephanie, shareislam

www.myshtub.blogspot.com/ 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!

www.mysweetks.blogspot.com/ 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.

www.ourblessingswitht21.blogspot.com/ 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)

www.ourthreelittlebirds.blogspot.com/ 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.

www.ourunexpectedjourney.blogspot.com/ Adrienne, sophie&blitz

http://www.pdxcarsons.blogspot.com/ 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.

http://www.reagans-story.blogspot.com/ Shauna, mutherbyrd
Ramblings about whatever crosses my mind in relationship to Reagan, Down syndrome and learning about many things medical and spiritual.

http://www.simeonstrail.blogspot.com/, Tara, momlakes
Mom of the super seven writes mostly about the ups & downs of Down syndrome, from a faith based perspective.

www.skiingthroughlife.wordpress.com/ 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...

http://www.snippetssnapshotssoapboxessuch.blog/ 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.

http://www.staceys07.blogspot.com/ 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 :-)

http://www.stinkerie.blogspot.com/ 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.

http://www.superdownsy.blogspot.com/ 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!!

www.swissfamilycarter.blogspot.com/ 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.

http://www.taylorvillethree21.blogspot.com/ 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.

www.teal915.blogspot.com/ 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.

www.tenderspringshoots.blogspot.com/ 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.

http://www.thebartolonefamily.com/ 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.

www.theblessingofverity.com/ 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.

www.thegreskofamily.blogspot.com/ Katie, NewMommy_Jack's

http://www.themomologue.com/ 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.

http://www.themorriskiddos.blogspot.com/ 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.

www.thetaooftulips.wordpress.com/ 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.

www.theupsideofdownsyndromethatis.blogspot.com/ Signe, GABGAV1

http://www.timandkelli.blogspot.com/ Kelli, rnkellit

www.tjsstory81408.blogspot.com/ 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.

www.triponthemtrain.blogspot.com/ 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.

www.unforeseengifts.blogspot.com/ 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.

www.up2thebrim.wordpress.com/ 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.

www.upsidedown21.blogspot.com/ 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.

http://www.welcometoourhouse-myjournal.blogspot.com/ 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.

www.yomammamamma.blogspot.com/ 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!

Wordless Wednesday

2011-01-19T06:21:00.001-08:00

- Posted using BlogPress from my iPhone

Some random musings on the r-word...

2011-01-06T17:44:00.000-08:00

These are mostly things I posted a long time ago on the Cincy Mom's Like Me message Board in response to Special Olympics R-Word campaigns...
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Hey Icee and friends, I'm glad you don't associate "retard" or "retarded" with Down syndrome.

I actually do - my beautiful child has Down syndrome, and technically, she is retarded.

Every time you use the word "retard," in essence you are degrading the person you are talking to as being at the same horrible, stupid level as my child (my words, not yours) and the hundreds of thousands of other people like her. This is a group of people, that specifically because of the type of disability they have, have a difficult time speaking up and saying "it isn't right to use our medical condition to degrade a person you think is behaving in a way that is slow."

You never say "retard" or "retarded" as a compliment, do you? It is always meant as an insult.

When people around me say the word (and yes, they do still say it, lol) I look at them and think "you are an ignorant person, and the person you are degrading with that insult could only hope to be as wonderful as my child." I also think about my other children who have such powerful carefree love for their baby sister, and cringe at the thought of them hearing someone use a word as an insult that clinically describes a person they love so very much.

Use the word if it makes you feel good, or powerful, or smarter than the person you are insulting. I realize it is your right to use the word. That said, I would respectfully argue that there are a number of other words that are less hurtful to a group of people that have a different sort of mental acuity than yours that are equally belittling and insulting to the person you wish to degrade. For instance "A$$hole" "loser" "jerk" "numbskull" - I could go on and on.

For anyone who is interesting in learning from someone far more articulate than I am what the use of this word means to the families of people with intellectual disabilities, feel free to watch this young man.

After a few other replies;

Steph772, in this country I'm pretty sure that no one in the country is being diagnosed by the medical community as "dumb" "idiot" or "imbecile." I'm fully aware of the history of those words, but as they aren't actively used medical terms that apply to actual people who are walking around any more, I don't have an issue with them. I've had to check boxes on medical forms that say my child is mentally retarded, so it feels different.

I'm not unreasonable, actually. I have been in places where the word "Retard" or "retarded" had been used in a perfectly appropriate context, describing music, for instance is appropriate, and another very intelligent person I work with used it to describe the fact that something was "retarding the growth of the automotive industry." Both of those contexts are okeydokey with me.
My opinion, lol, is you are all better than calling people retards. You just are. It isn't nice, it hurts people and there are other words just as good. Can you use it? Sure. Does it hurt me and my family, and feel insulting to my little innocent baby. Yes, it does. But we are a free society. Do as you please. But when you use it now, you aren't using it out of ignorance. You know how it makes me and my family feel, and you know that intentionally or not, in its meaning, it disparages a person who has less mental capacity than you do. If you teach your kids to use it, they may unintentionally hurt my children. You may not care, and I respect that. You may think I'm too sensitive, and I respect that too. But you do have a choice to find another word as well.

I'd sure appreciate it.

Thoughts on Down Syndrome Research and Alternative Supplements

2010-12-30T06:45:00.000-08:00

There is a nice chart in the Down syndrome Nutrition Handbook that shows many of the common alternative remedies and possible risks.

http://www.downsyndromenutrition.com/store/item_view.asp?estore_itemid=1000004

My rule of thumb with my child is roughly this:

• I learn about a supplement and its potential benefit for people with DS.
• I research the supplement and any evidence based research that it works.
• I research the supplement and how it impacts individuals with DS.
• I research the supplement with the words "scam" after it on google.
• I look up the person who recommends it with the word "quack" after the name on google.
• I consider if I would feel comfortable taking it personally or if I would have my 5 year old take it.
• If I still think it looks like something I would consider giving her, I ask her pediatrician about it.
• If he says no problem to try, I'll give it to her and see how she responds.

That has lead me to DHA (ped's daughter does brain research and told him from the research she has seen, he needed to start taking fish oil, so HE does.) It is basically cod liver oil and both my younger girls take it. We buy this brand: http://www.amazon.com/Nordic-Naturals-Childrens-Dha-liquid/dp/B000ORY45G

That led me to a chewable Methyl B12 (we use this one - http://www.amazon.com/Foods-Methyl-B-12-5000mcg-Lozenges/dp/B003O1R73U)

That led me to occasional caffeine in food (more so when she was nursing through my breastmilk than now)

That led me to CoQ10 through my breastmilk, and I'll start that up again when she can chew a full CoQ10 pill (I didn't like the liquid method.) I used and will use this brand - and may just go ahead and order this one sooner rather than later http://www.epic4health.com/ch60chhidoco.html

I'm still on the fence about Ginkgo - I don't like the potential conflicts for heart/blood if she needed sudden surgery (though I have heard they can do things if they know she is taking it to contradict the issues). I do like the anecdotal reports parents using it give in terms of how it impacts speech. I've gone as far as knowing which brand I would order if I ever do order it - but just haven't pulled the trigger yet - it would be this one! http://www.amazon.com/HoneyCombs-Industries-Liquid-Ginkgo-Extract/dp/B0001ITV42

When Violette was constipated early on, I tried probiotics. She was so sick to her stomach. I stopped those right away. Conventional Miralax for her after that and it worked like a charm! In many cases, the researched medical option is the best!

I think every parent has to make the decisions they feel are best for their child. I know when Violette was first born I checked out every single possible therapy for her. I know parents who use various natural/alternative remedies with their kids and who are quite happy with the results. More power to them for their kids, I say. For me, I take what I consider a more conservative approach, and that is good for me. Who really knows though, if another parents more aggressive approach might not be better for my child?

There have been instances where parents have, through trial and error, and research found non-conventional remedies that have positively changed the reality for all children with certain issues. Will that happen with individuals with DS? Hard to say, but I can't blame them, particularly the ones with medical backgrounds, for trying.

Most of the focus of legitimate, medical research seems to be on treatments that would show small improvements in cognitive skills that would make a big difference for individuals with DS in their day to day lives.

DSRFT has a program called +15 that you can read about here: http://www.dsrtf.org/ They are affiliated with the Stanford DS Research Center where quite a bit of research with Down syndrome mice is taking place.

I'm warming up quite a bit to the push that is going on toward encouraging more National Institute of Health money and research being spent on DS. So much has changed with medicine in the last decade, and so little has been spent on Down syndrome. Michelle Whitten of the Global Down Syndrome Foundation is leading the charge (she is a mother of a child with DS.) She is a one woman power house stirring the pot and facilitating discussions with the government, medical community and parents. Her actions that will lead to many interesting possibilities for kids with DS!

This new push will lead to many interesting findings about individuals with Down syndrome, benefits to those of us without DS, and likely some very challenging ethical issues for us as parents about which treatements to give our kids and what the long term value/challenges of the treatments might be.

Should continue to be an interesting subject!

How we got Violette to wear her glasses

2010-12-28T13:49:00.000-08:00

Violette wears Specs4Us Glasses (or glassies, as she likes to call them.) My hints for getting her to wear them? Violette was 2 years, 3 months when she got them. We totally let her control when they went on and when they went off - we encouraged her to put them on herself, and showed her how to fold them up. I had been told they were sturdy, and they are, so I decided to test that, and let her have control over when they were on and when they were off. First thing in the morning the glasses go on, and I'd let her put them on. I'd let her take them off at night. If she took them off, we'd hand them to HER to put back on - not try to put them on her. We had SO much praise when she put them on, and how great she looked, and everyone we knew who wore glasses wore them while she was getting used to them. We also took her places where she needed to see things far away - and that was so much better with the glasses!

She LOVES her "glassies". She lost them one morning on the bus - they found them at school and she was kissing them when she found them! Let me know how it goes. I really think the Specs4Us were a key. They are a great brand, with great customer service and lots of sizes and styles. They will work with you where ever you are!

Hope those tips help!

Top 12 Reasons You Should Participate In Your Local Down Syndrome Group

2010-11-23T19:25:00.000-08:00

I have often heard people say "I went to a playgroup, but I just didn't get anything out of it" or "I don't know why I should take my 4 month old to our local DS group." Personally I don't understand that. We have a great local group in Cincinnati in the DSAGC (Down Syndrome Association of Greater Cincinnati) and last year three friends of mine have restarted a neighborhood group on the Eastside of Cincinnati. I'm so glad we did.

We didn't have any set course of action - we've just been doing what feels right to us, and planning activites that we enjoy. We have playgroup, which is kids birth - 5ish, and a Buddy Club that is kids 6-12. Some activites the whole group does together, some are geared more toward the bigger kids, some the little ones. We also have mom's night out every month. We get between 4 and 12 moms every month. Doesn't matter if you can come once or every month - everyone is welcome. Our activities have ranged from the Museum, to the pumpkin patch, to movie night with the mom's to watch Monica and David, to going to Granny's Garden. Some months we have great turn out some just a few. But all of them have been fun.

I love our group today. We know each other, we have a great time, we have birthday parties together, and socialize outside the formal group events. It is a blast!

So why do I think it is important for our family to participate in our local DS group, and why do I think you might want to as well? Here are my top reasons for getting involved today!

Meet people who have children older than your's and get a glimse into what is to come
Support people who are new to the Down syndrome community
Have fun - our group isn't like a typical "support group" - we have a good time, laugh and socialize
Give your child with Down syndrome peers who also have Down syndrome
Give your "typical" kids the chance to interact with children their own age with Down syndrome so they can experience "more alike than different" first hand
Give your child with Down syndrome the chance to play with the "typical" siblings their age
Network about Early Intervention in your area
Network about the medical community in your area
Network about IEPs and schools
Learn about programs and opportunities in your area
Become more confident in your ability to successfully parent your child with Down syndrome
Make lifelong friends who you will know and trust in 18 years to come up with innovative housing and social activities for your child

If you don't have a group right now, consider starting one. If you don't like your group right now, see if you can change it, or do your own thing with a smaller group. I know I'm glad I did!

31 for 21: Wordless Tuesday!

2010-10-12T19:08:00.001-07:00

- Posted using BlogPress from my iPhone

Location:Markeywoods Way,Cincinnati,United States

31 for 21: A day in the life

2010-10-09T20:48:00.000-07:00

So I did a lot today. First up at the crack of dawn to take Viv (our 10 year old) to her Lyric Choir Retreat. The Choir is 5th grade to 8th grade kids, and is through the Cincinnati College Conservatory of Music and it is wonderful. Then I came home, and called the doctor to see if we could fit Lilianne (our 5 year old) in at the Doctor's office - she's been feverish and not her self. I went home after dropping off Viv, and Steve made pancakes for all of us. Took Lilianne to the doctor and she had an ear infection (second one ever, second time ever on an antibiotic!) Lilianne and I went to pick up the perscription at Walgreens (where the pharmacy is like the Cheer's Bar to me - everyone knows my name, lol.) Then off to the car wash, and got some cookies to take to the 5th grade parent party tonight. Then back up to where the retreat was with my mom and Violette. She loved the concert, and was very relaxed. It is so nice to take a 3 year old someplace like that and know 100% that she will behave, not run around, and not be loud. Violette fell asleep on me during the beautiful concert, giving me the best hug ever as she did it. When the concert was over, she bounced right awake and said "HI VIVIANNE!" We then went down to the Down syndrome Fall party. So much fun - we saw probably 6 self advocates who helped make the party nice, bringing the food down, hiding the goodie bags for the kids, mixing with us. We then came home, and got ready for the party, and went to the party - it was a beautiful evening in one of Vivianne's best friend's homes.

Was there Down syndrome in my day? Yes, every single day there is Down syndrome in our day. Was my day filled with medical things? Yes, but not a bit of it today had anything to do with Down syndrome or Violette (other than giving her some reflux medicine.)

Not the life I expected I would have parenting Violette and her wonky chromosome (as Vivianne calls it.) The thing is, it is all normal, but with that little tiny special bit of something extra. Just like Violette!

31 for 21: I just met a normal child

2010-10-07T14:49:00.000-07:00

I just saw a normal child.

She is a girl (or he is a boy.)

She lives in Cincinnati (or someplace in the world, or in a hospital, or on a boat, or in a shelter.)

She is Caucasian (or African American, or Asian, or a mix of ethnicities that is uniquely his own.)

She likes Spongebob (or Blues Clues, or the Nature Channel, or she doesn't watch TV, or his dad can't afford a TV.)

She has blonde hair (or black, or red, or brown, or has lost his hair.)

She has blue eyes (or hazel, or green, or brown, or she doesn't have an eye.)

She loves to play with her sister (or brother, or 16 siblings or he has no siblings.)

She lives with her natural mother and father (or grandmother, or sister, or guardian, or he was adopted.)

She loves her bunny and her baby Addy doll (or his trucks, or his teddy, or he's not particularly attached to anything.)

She likes drawing pictures (or playing soccer, or taking dance lessons, or stacking blocks, or rocking back and forth or playing with a jump rope.)

She loves to eat popsicles (or sushi, or rice, or bananas, or jello, or he is very picky and only eats cheerios.)

She may grow up and marry a man (or she may not marry, or he may be attracted to other men.)

She may struggle at school (or get straight A's, or drop out of school.)

She has Down syndrome (or no syndrome at all, or is in a wheelchair, or was born with her fingers fused together, or is autistic, or can't see, or wears a hearing aide.)

But one thing I know for sure, she is NORMAL. Have you seen her?

All the controversy

2010-10-06T20:14:00.000-07:00

I thought a post about all of the areas that I've seen in the Down syndrome world that are somewhat controversial might make an interesting post. I was given some excellent advice when I first had Violette, and that was that we should make the best decisions we can for her, knowing what we know, and not to second guess ourselves. That said, I have looked at everything on the list, and made decisions on Violette's behalf in most cases not to do any of them, mostly because I can't find enough evidence based research that they work (and with some on the list I've heard for three years that the evidence based research is coming "soon."

But on the other hand, there are individuals who I've met who SWEAR that the therapy/approach/tools/supplements listed below work for their child. So what do you think? How do you decide? What is the criteria you use to pick which to do? Do you do everything? Nothing, a bit here and there? Only non-invasive things? Share with me your thoughts and opinions on this. Oh, and if I'm missing something that has some controversial aspect, please post it with a link- I'm interested!

Speech Therapy
http://www.talktools.net/ - A protocol of whistles and straw therapy. Since Violette was born they have been saying they are coming out with evidence based research to "prove" that the method works.

This article talks about how non-speech oral motor exercises like what is suggested in Talk Tools does not have evidence based research behind it:
http://www.ohioslha.org/pdf/Convention/2011%20Handouts/MS32SpeechLofC.pdf

Neurodevelopmental Approach
http://www.hope-future.org/
http://ican-do.net/

My understanding is that neurodevelopmentalists advise against signing with your children, though evidence based research through DownsEd and others have proven its effectiveness with children with Down syndrome.

Vitamins/Supplements
Juice Plus+® -is a whole food based product providing the wide array of nutrients found in a variety of nutritious fruits, vegetables, and grains. http://www.juiceplus.com/
NuTriVene-D
We specialize in nutritional and dietary supplements for children and adults with special healthcare needs.
www.Nutrivene.com/

But do they work?
Vitamin/Mineral Supplementation: There has been a lot of debate over recent decades regarding the usefulness of vitamin and/or mineral supplementation in people with Down Syndrome. I have collected here a number of scientific articles which address this topic. http://www.ds-health.com/vitamin.htm

Nutritional Supplements for Down Syndrome: A Highly Questionable Approach http://www.quackwatch.com/01QuackeryRelatedTopics/down.html

Nutrition Supplements for Down syndrome: What Happens When Hope Meets Hype. http://findarticles.com/p/articles/mi_m0GCU/is_n4_v15/ai_21024160/?tag=content;col1

Naturally Better: Dramatically Improve your Child's Life Naturally
http://naturallybetterkids.com/

A few peer-reviewed, double-blind scientific studies of the efficacy of supplements, vitamins, etc.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2267988
http://www.ddhealthinfo.org/index.pacq?id=44&tier=2
http://cme.medscape.com/viewarticle/570666_print
http://www.medpagetoday.com/Pediatrics/GeneralPediatrics/8468 http://www.nutraingredients.com/Research/Antioxidants-fail-to-benefit-children-with-Down-s-Syndrome
http://www.bmj.com/cgi/reprint_abr/336/7644/594.pdf

And a counter to the question "Do They Work?"
http://www.gotdownsyndrome.net/rebuttal.html

Changing Minds Protocol
http://www.changingmindsfoundation.org/

Many national and international Down syndrome organizations have questioned this protocol. The official statement on the subject from those organizations can be found here:

http://www.down-syndrome.org/statements/2106/

Green Tea
http://dstoner.net/Math_Science/Downs.html

31 for 21 - Funny IEP Video...

2010-10-05T20:32:00.000-07:00

An IEP, for those of you who don't know, the IEP is an Indivdualized Education Plan (Learn more about it here: http://specialchildren.about.com/od/specialeducation/f/iepfaq01.htm)

This video is really funny - not much like our IEP's, but it will give you an idea of what they are like, and how all parties to them can come across!

31 for 21: Doctor Violette

2010-10-04T13:10:00.000-07:00

Miss Violette loves to play! She plays all the time. Here is a little video of her pretending to be a doctor.

I often will stick my fingers in her ears claiming to look for potatoes. And I think she was telling me that the baby had BEAUTIFUL ears, not what I said (she signed beautiful when I didn't understand her, lol.) I'm certain Doctor Shott and Dr. Hermann have told her she has two "beautiful ears" after appointments!

31 for 21: Happy Halloween!

2010-10-03T15:09:00.001-07:00

We love learning the signs with the seasons! Here are all of the Halloween Signs!

31 for 21: Keeping Track of Milestones with Down syndrome

2010-10-02T20:48:00.000-07:00

So when you have a child with DS, you suddenly become much more aware of milestones, when they are "supposed" to be met, and where your child is compared to that date. Then for me anyway, the when became much less important than meeting them eventually has become. So here is a brief rundown of my favorites when it comes to milestones...

Ok, I like the Gross Motor Book from Woodbine - http://www.woodbinehouse.com/synopsis.asp_Q_product_id_E_0-933149-81-6 - it really is clear and shows the steps in development. I didn't try to read the whole thing, just what was coming up next (I try to stay a step ahead of her, lol.)

As for development in terms of weight and length, I really like this MedCalc interactive growth charts - on the right hand side you see a box you can click for the Down syndrome growth charts - I like comparing the typical to the DS ones.

http://www.medcalc.com/growth/

I also like to keep track of the typical developmental charts - I really try as best as possible to disregard the ranges for meeting those milestones, but like to know "what" as much as "when." I was given a HELP chart by our hospital - there are three of them and they are very comprehensive. They cover social, gross motor, cognative fine motor, self help skills, etc. I asked our EI folks if they could get them for me, and they did free of charge. You can also order them here:

http://www.vort.com/products/150.html

I review the HELP charts every 3-6 months or so to make sure I know the next things developmentally she should/could be doing, and put activities with those sorts of things in front of her to do. I also use the next batch of developmental milestones as a basis for goals for our ISFPs (I'm a bit of a control freak when it comes to ISFPs - I tend to write them with what I think she and we can help her to achieve, and let them rewrite them how they like them.)

Finally, I really like the DownsEd DS Milestone charts - I think they are most comprehensive -

http://www.down-syndrome.org/information/development/early/?page=7

As for the Babies with Down Syndrome book http://amzn.to/91eWPK - I have it. There are things I like about it, and things I don't like about it. I think the new version is much better than the old, but I'm still a bit lukewarm. I think it was too much information for me when I first got it. Just my personal feelings about it.

31 for 21: Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome

2010-10-01T19:12:00.000-07:00

Want to know what I've spent a whole lot of time on lately? Want to know why I haven't been blogging?

I was lucky enough to get involved with a WONDERFUL project with my dear friend and now author Nancy Iannone. Nancy and another Down syndrome mom friend of mine, Stephanie Hall Meredith wrote this wonderful, beautiful and free book for mom's who are having babies with Down syndrome! Please support this effort - if you can personally donate, great, if not, please ask your local DS group to consider a donation! We'd love to do even more for mom's who will be having (or get a screen indicating a higher likelehood of having) a baby with Down syndrome! Special thanks to Kan Hor from Cincinnati Children's Hospital, Violette's wonderful cardiologist for agreeing to review the cardiology section of the book!

Free Down Syndrome Pregnancy Book and Website Launching Today

DownSyndromePregnancy.org will launch on the first day of Down syndrome awareness month. Visitors will be able to download a free pregnancy book.

Sewell, NJ, October 01, 2010 –(PR.com)– Expectant parents have a new resource to help them as the await the birth of a baby with Down syndrome. The website DownSyndromePregnancy.org will launch today, featuring a free downloadable pregnancy book, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome by Nancy McCrea Iannone and Stephanie Hall Meredith.

In recent years, the area of prenatal testing has become more sophisticated, and more accurate blood tests are on the horizon for next year. Expectant parents learning about a Down syndrome diagnosis spend four to six months waiting for the birth of their baby and wondering about the future. This book is a practical resource for women who are moving forward with a Down syndrome pregnancy.

Iannone and Meredith, both parents of children with Down syndrome, recognized that expectant mothers with a prenatal diagnosis face some unique challenges that were not being specifically addressed in current literature. The authors understand the sense of isolation and grief after receiving a diagnosis and the sense of empowerment and validation that comes from understanding the condition.

The pregnancy book has been reviewed by expectant mothers, prominent leaders in the Down syndrome community, and a distinguished team of medical professionals, including Dr. Brian Skotko, a Clinical Genetics Fellow at the Children’s Hospital Boston, and Dr. Harish Sehdev, a perinatologist and Director of the Prenatal Diagnosis Unit at Pennsylvania Hospital. Other professionals on the review team included obstetrician Dr. Joann Richichi, cardiologist Dr. Kan Hor, genetic counselor Cam Brasington, and breastfeeding specialists Dr. Sarah Riddle and Dr. Sheela Geraghty.

“This publication goes beyond just being a very useful resource for couples; it also has a very human side that comes through openly and compassionately. This book points out many important thoughts that I express to my patients …. The more information that a couple has, the better prepared they are to make it comfortable and enjoyable for their family.” — Dr. Harish Sehdev, perinatologist and Director of the Prenatal Diagnosis Unit at Pennsylvania Hospital.

The audience of the book is specifically expectant mothers who are continuing a pregnancy; the book is not appropriate for women who are still weighing options about their pregnancy.

About DownSyndromePregnancy.org

Down Syndrome Pregnancy, Inc. is a New Jersey non-profit corporation whose purpose is to provide information and support to expectant parents waiting for the birth of a baby with a diagnosis or increased chance of Down syndrome, and the local Down syndrome groups that serve them.

The organization’s website, DownSyndromePregnancy.org, hosts an interactive blog and the book as a free, downloadable guide for expectant mothers. All materials are geared to non-political, honest, compassionate and informative support for those in post-diagnosis pregnancy or waiting until birth for a confirmed diagnosis.

The board of trustees for Down Syndrome Pregnancy, Inc. includes Down syndrome community leaders from all over the nation who provide direct support for expectant parents.

Trustees of Down Syndrome Pregnancy, Inc.

Melissa Kline Skavlem, President (Cincinnati, Ohio)
Stephanie Meredith, M.A., Senior Vice-President (Atlanta, Georgia)
Amy Geoffroy, Senior Vice-President (Central New Jersey, relocating to Oregon)
Sarah Hartway, R.N., M.S., Vice-President (Denver, Colorado)
Heather A. Trammell, Treasurer (Northern Virginia)
“Nancy” Iannone, B.A., J.D., Secretary and Executive Director (Southern New Jersey)

Imitation - not only a form of flattery, but a skill we work on a lot with Violette!

2010-08-17T18:56:00.000-07:00

http://www.down-syndrome.org/reviews/2076/
I heard the authors of the article above in Boston a few years ago. The article is pretty academic, but has some great information. The part about teaching imitation is particularly informative (I've written the authors and asked them why they don't have their research more widely distributed, and they offered to send me a few pdfs of presentations they've made - I haven't seen them yet but will try to get permission to link to them when I do!)

Anyway, they talk alot about teaching skills for imitation. Banging the table, rubbing your nose, patting your head - lots of silly stuff. Helping out if the child doesn't do it to get them to do it so they get the idea that when you do something, they should try to do the same thing. Our kids apparently have a deficit in imitation skills, and until they learn to imitate and really get the idea of it, imitating speech and sounds are going to be difficult.

After I heard the session I spent a lot of time working with Violette on improving her imitation skills. I know after I learned about how important that skill was toward getting her to do lots of other things and really worked on it I saw a big difference in her ability to imitate sounds (or at least try to!)

We played/sang "can you do what I do? I do? I do? Can you do what I do? Tap Tap tap (where it says "Tap Tap Tap we put in whatever we want her to do.)

Now I can say "do X Violette" and she knows what it means to do it. She doesn't always do it right away, but eventually she tries. The good thing about teaching imitation is it is a skill that carries through so many other areas - writing, speaking, drawing, movements, etc. all can benefit from strong imitation skills!

The First Year With Violette: What worked, what I wish I had done differently

2010-08-02T18:14:00.000-07:00

A mom came on the Baby Center Down syndrome board asking what the more experienced moms felt they did right and what they wish they had done the first year...here's my response...so I don't forget it!

I think it is really important to remember that you are raising a whole child. That first year, it is so easy to focus on the big milestones which are mostly gross motor things - rolling over (which usually comes pretty easy to our lo's), sitting up, crawling, standing, walking. Those things, as exciting as they are really aren't a race to get there - from what Pat Widners says, you want them to learn to do them right with good form, not just do them. If your child takes his or her time doing them, be patient and know they very likely will do them eventually. But, if your child isn't meeting those on the typical time table, you can still think of what sorts of things a child that age would be doing, and bring that sort of activity to your child. For example - if they aren't crawling, move them around to places you think they would be exploring naturally, and then let them explore there. If they'd be making a mess, give them an opporunity to make a mess. You may have to bring more experiences to the child so they can learn all the other things you learn when you are mobile.

I always wanted to see the developmental milestone charts to know what she should be doing (the HELP Charts are really good ones to get your hands on if you are interested.) She didn't meet everything when she was supposed to, but I could try to put developmentally appropriate things in front of her to at least expose her to them - so in some cases she surprised me by being able to do things on time, and in other cases, she was at least exposed to them, and I could re-introduce them or show them to her when she was more ready to do it.

I was told Tummy time was the single most important thing I could do for her early on. Apparently a strong core helps with everything - crawling, writing, walking, you name it. I was told something like 20 minutes on her tummy every waking hour. I tried the best I could to make sure that happened...

Signing. I read a lot of research early on that said that signing with your child with Down syndrome was a great thing to do. We had signed more, please and all done with my middle child, and I decided that we, as a family, were going to learn sign language. I was worried that she might never talk (for some reason) and wanted to be able to converse with her if she didn't. Plus I knew that learning another language is really good for children's brains, and decided that it would be a great exercise for my older children. We made it a family game. She knows over 200 signs, and has in the last several weeks been dropping the signs rapidly in favor of talking. We learned through Signing Time videos and Signing Savvy. We learned gradually, and I tried to mimic our sign acquisition to parallel the order a child learns language.

Worked her hands. I had a long scarf with fringe I'd let her pull on, and I'd pull back. Seems like we did that alot when she was about 6 months old waiting at therapy and doctors appointments.

Therapy should always be fun (and if you find a therapist who thinks and behaves otherwise, I'd probably find a new one) in my opinion. Any "work" you do with the baby at home should be fun. There can be a purpose behind everything you do, and you can do purposeful things all the time, even if you have a busy life. But I honestly believe that to your child (and your other children if you have them) it should only feel like you are the most fun parent in the whole world. Everything everything everything is a game, or play or being silly with me. But a lot of it has a purpose.

Eye tracking - I had a little mouse rattle that made a noise that I would play a game with Violette with from the first time I saw she could follow something with her eyes. I moved very slowly at first - up and down, left and right. Then I built up to adding corner to corner, circles, etc. I started all of this very slowly, and built up to very very very quickly that she could follow what I was doing. We started with short sessions, and built up to pretty long ones over time. I wanted her eyes to "look sharp" whatever that means, and thought if I could build up the speed she could follow things early on it would be a helpful muscle to build. The sound plus the colorful mouse were attractive to her, and I think she really liked that game a lot.

I did think of one regret - I heard an excellent session when she was about 2 related to teaching imitation skills. Apparently our kids have a hard time mimicking what other people are doing. In the session she talked about a very specific procedure of putting the child in the high chair, and encouraging them to imitate. So If I bang the high chair, then I say "your turn" and wait for the child to do it. If they don't, I prompt them to do it. You keep building on that until they start learning how to imitate motions and getting the idea of that. Then you work to have the child imitate sounds. Learning about improving her skills at imitating was really helpful to me, and helpful for me to help her learning to talk.

Also wish I had known about cross patterning - t is basically working on synchronizing the sides of the brain learning how to crawl (which ties into a lot of other skill)...used a lot for kids with CP - I did this a little, but I wish I had learned about it a bit earlier - she never had a smooth pattern of crawling, and I think this might have helped...

www.youtube.com/watch?v=QsAl97RyuX8

I also wish I had started my blog sooner, and used it as much as a diary/reference tool for what we did that first year as for sharing with the world.

Those were the big things I could think of - any other bloggers want to contribute their list of things that worked (or things they wish they had known)?

Kelle Hampton

2010-07-17T17:34:00.001-07:00

Braska on the big scree

2010-07-17T10:26:00.000-07:00

- Posted using BlogPress from my iPhone

Location:Epcot Resorts Blvd,Southwest Orange,United States

JoyFitStix Session

2010-07-17T06:18:00.000-07:00

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Opening party

2010-07-16T17:42:00.001-07:00

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NDSC Orlando

2010-07-16T17:39:00.001-07:00

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Video of Violette with her Favorite Birthday Present

2010-06-27T06:03:00.000-07:00

Violette had a great Birthday, and I'll be posting a bit more about her turning three soon, but I thought you'd enjoy seeing her with her favorite present that her sweet Godmother Julie gave her!

A Horrible Monster in my house!

2010-06-13T06:06:00.000-07:00

Watch out - those horrible monsters can be pretty scary. And why again did I think she wouldn't have as much personality as the other girls?

Down Syndrome Pregnancy: 53 Things To Do Instead of Worrying

2010-05-01T12:10:00.000-07:00

Everday, I talk to a number of mom's who are passing time until the birth of their child with Down syndrome, or they are waiting to find out if their child with have Down syndrome. I remember how long that time can seem. I also remember that at the end of a long day, I'd find myself on the computer looking for information. Sometimes, since I didn't know where to look I ended up at highly medical sites that scared me. I decided to put together a list of 51 things to do instead of worry about having a child with Down syndrome while you are waiting. I hope you enjoy it, and I hope that lots of people will contribute other ideas of what worked for them.

Don't feel like you have to go through the whole list in one sitting, and if something on here doesn't make you happy, move on to something else. These are all the things I wish I had been thinking, doing and looking at instead of worrying about my child when I was waiting out my 1 in 16 odds that she would have Down syndrome.

1. Look for pictures of children with Down syndrome who look like people in your family. When you start looking at a lot of people with Down syndrome and their families they start looking very different from one another - your baby will too!

2. Make a gratitude journal http://www.iamthankful.com/gratitude-journal/

3. Visit Happy News http://www.happynews.com/

4. Watch the Natalie Merchant Wonder Video http://music.aol.com/video/wonder/natalie-merchant/1102808

5. Read the research behind signing to your child with Down syndrome – http://www.riverbendds.org/useofsigns.html

6. Bookmark the Medcalc Growth Chart - you can use it no matter how many chromosomes the baby has http://www.medcalc.com/growth/

7. Learn a new sign: Milk http://www.signingtime.com/blog/2010/02/sign-of-the-week-milk/

8. Learn a new sign: Baby http://www.signingsavvy.com/wordlist/13/BABY/230

9. Learn a new sign: Drink http://www.signingtime.com/blog/2010/04/sign-of-the-week-drink/

10. Learn a new sign: Eat http://www.signingsavvy.com/wordlist/13/EAT/252

11. Learn a new sign: More http://www.signingsavvy.com/sign/MORE/272/1

12. Learn a new sign: All Done http://www.signingsavvy.com/search.php?search=all+done&find=1

13. Check out all the baby signs on Signing Savvy - http://www.signingsavvy.com/wordlist/babysigns

14. Visit http://www.bored.com/

15. Think of names for the baby

16. Research your local DS group http://www.dsaia.org/joomla/index.php/affiliate-directory.html

17. Learn about the Buddy Walk http://www.buddywalk.org/

18. Read my blog post about things adults with Down syndrome can do http://yomammamamma.blogspot.com/2009/10/31-for-21-what-can-person-with-down.html

19. Read my blog post about business’ run by people with Down syndrome http://yomammamamma.blogspot.com/2009/12/businesses-owned-by-people-with-down.html

20. Read Praying for Patience by Rachel Coleman, founder of Signing Time http://www.rachelcoleman.com/2007/05/09/mothers-day-essay-i-won/

21. Read Rachel Coleman’s “strong enough to be your mother” blog post and be inspired that you have that kind of strength in you http://www.rachelcoleman.com/2008/07/15/strong-enough-to-be-your-mom/

22. Go shopping and purchase something for the baby that you think Angelina Jolie or the Queen would buy for their children. You child deserves something nice too!

23. Write a list of the things you are most scared about, and post it over on the Baby Center Down syndrome Pregnancy board and let them help you sort out which ones are legitimate and which you don’t need to worry about so much http://community.babycenter.com/groups/a14515/down_syndrome_pregnancy

24. Read about the Pujols Foundation http://www.pujolsfamilyfoundation.org/about/

25. Write down dreams you had for yourself and your family before you found out and picture doing them again.

26. Think of one thing you love to do, and Google that hobby plus the world Down syndrome. I bet you can find someone with DS doing it!

27. Visit The Desk and get a glimpse at the Medicaid services that may be available in your state. If you are worried about finances, this is a good place to start learning. http://www.thedesk.info/

28. Learn about the Early Intervention Program in your state. http://www.nectac.org/contact/ptccoord.asp#OH

29. Buy a Webkinz pet and play games in Webkinz World. Ok, it is for kids, but sometimes just having something to keep your mind and your hands busy is helpful! You can get one at most Hallmark Stores

30. Visit this Special Needs Dictionary to know the different terms you might hear with a child with Down syndrome http://earlychildhoodmichigan.org/Dictionary.htm

31. Visit Conny Wenk’s blog and check out all of her beautiful photographs of children with Down syndrome. http://connywenk.blogspot.com/

32. Read some of the Bridget’s Light blog http://bridgets-light.blogspot.com/

33. Read Kelle Hampton’s birth story. Poke around other posts on her site to see how Nella is doing. http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

34. Watch my favorite signing video, Caterpillar Dreams: www.youtube.com/watch?v=gGF3iC0o_1s

35. Think signing isn’t cool? Watch this - http://www.youtube.com/watch?v=QmKnQjBf8wM

36. Another think signing isn’t cool? Watch this - http://www.youtube.com/watch?v=CCZkQ_s-Bdk&feature=related

37. Learn about the wonderful Karen Gaffney - www.karengaffneyfoundation.com/

38. Learn about current Down syndrome research - www.dsrtf.org/

39. Read the book Gifts http://www.amazon.com/Gifts-Mothers-Reflect-Children-Syndrome/dp/1890627852

40. People may not know what sorts of things would be useful to you and your new baby – check out this list - http://yomammamamma.blogspot.com/2009/05/things-you-might-want-if-your-baby-has.html

41. Are you worried about “doing it all” once the baby comes? Consider a program like E-mealz http://www.e-mealz.com/ , dine without whine http://www.dinewithoutwhine.com/ or Saving Dinner http://www.savingdinner.com/ – a quick search on menu planning will help you come up with other ideas as well.

42. Watch an episode of The Specials http://www.the-specials.com/ . Try to see past the speech difficulties the individuals have, and watch how they are living their life. Changed my mind about "group homes" forever.

43. Read Jennifer Bekin’s story and bookmark her blog – Jenn is a speech therapist with 3 siblings with Down syndrome. http://communicationskillsforlife.wordpress.com/about/

44. Read my document on Social Media and Down syndrome (I'll link to it soon!)

45. Enjoy this motivation speaker talking about his life http://www.youtube.com/watch?v=ROWbyKVLYr8&feature=player_embedded

46. Read 10 ways a baby with Down syndrome will improve your life http://hubpages.com/hub/10-Ways-A-Baby-With-Down-Syndrome-Will-Improve-Your-Life

47. Read about the Traveling Afgan Project, making it’s way around the world! http://www.thet21travelingafghanproject.com/2009/02/t21-travelling-afghan.html

48. Check out the inspirational stories, poems and quotes on the Café Mom message board. You’ll love some and dislike others – try to figure out why you feel how you do – it will help you sort out your feelings about parenting your child www.cafemom.com/group/1152/forums/read/1062122/Inspirational_Stories_Poems_and_Quotes

49. Watch some funny clean videos http://funnycleanvideoclips.com/

50. Life with Down Syndrome doesn’t mean you won’t laugh! http://www.unomas21.com/amusing.htm

51. Visit Down Right Beautiful! What a beautiful Site! http://www.downrightbeautiful.org/

52. Read about Dr. Brian Skotko - a wonderful person (he was a very complimentary judge after my Karaoke at a DS event), a Harvard educated Doctor, a specialist in Down syndrome and the brother of a woman with Down Syndrome - I'm a BIG fan - http://www.brianskotko.com/

53. Learn about College opportunities for people with Down syndrome and other intellectual disabilities! http://www.thinkcollege.net/

Running...

2010-04-27T19:58:00.000-07:00

The letter I sent letting people know Miss V had Down syndrome

2010-04-10T22:41:00.000-07:00

Trying to make sure I have a place to point new mom's if they want to know how I told people...who knew a few years ago I'd want access to all this stuff!

Dear Everybody,
As you know, Baby Violette Hope showed up on Tuesday, June 26 at about 2:15 in the morning. She is sweet and wonderful and beautiful and a blessing and she has Down syndrome.
I had quite a few prenatal screens and feel very confident that her body parts are all in good shape. Any of the typical physical characteristics that can cause problems for babies with Down syndrome aren't showing up - her tone is excellent, her heart is good, her suck is good, her ears are good, etc. etc. The doctor we met with this morning told us that her good muscle tone is one of the only early indicators that they have about the severity of impact the Down syndrome will have on her, and that she looks terrific to him.
I had many preconceived notions of what Down syndrome was all about, and from what I’ve learned this week, I was wrong about quite a few things and was putting some limits on Violet that don’t need to be there. There are a lot of early interventions that have led many people with Down syndrome to have very full lives, that include independent living, working, even secondary education.

From everything my husband and I have been told, the best thing for us to do is welcome her as a part of our family and treat her like we did our other beautiful babies. That’s pretty easy. We are very joyous to have her as part of our lives.

I plan on continuing working and doing what I’ve been doing here at XXXX – and everyone I’ve talked to in the medical community seems to see no reason at all to change that plan. She’s even been given the green light so far to come with me (and my mother) to Las Vegas when I visit the XXX tradeshow in September!

We have high hopes that she will lead a full and wonderful life.

My husband and I really appreciate everyone’s support and good wishes!

Missy

Great iPhone apps

2010-04-08T19:36:00.001-07:00

A few great iPhone apps to look at geared toward the two-three year old set! Some are specific to Down syndrome...

Learn To Talk by Learntotalk.com

Going places by Model Me Kids

iPlay and Learn by Parents Magazine

Signing Time

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Location:Ohio Pike,Forestville,United States

What Violette just drew

2010-03-30T18:22:00.001-07:00

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Location:Foxberry Ln,Bonita Springs,United States

Baby Center Down Syndrome Message Board Blog Roll

2010-03-30T13:37:00.000-07:00

I get a lot of helpful information from the mama's over at Baby Center's Down Syndrome Board. It is so nice having, oh, over 100 friends who have children with Down syndrome who are right around Violette's age, all across the country. It is great knowing what other kids with Down syndrome are doing who are around her age, what they do in therapy, what sort of services they get, etc.! It makes everything so much easier having a circle of support like this!

Here is a list of all the blogs for many of my friends over there

Name of the Blog, Blogger, BC Name
http://justjackjack.blogspot.com/ Brandi, michaelandbrandi
http://mooscrossing.blogspot.com/ Melissa, Lallybroch
http://www.skiingthroughlife.wordpress.com/ montanabound57
http://www.ourthreelittlebirds.blogspot.com/ Ann, atjtnt
www.missfancypants.wordpress.com/ Laura, MissFancyPants
http://tjsstory81408.blogspot.com/ Cindie, beauty3551
www.taylorvillethree21.blogspot.com Christie, one+twins=3boys
http://muslimmamadsblog.blogspot.com/ Stephanie, shareislam
http://www.littleliamburns.blogspot.com/ Kristin, kandkb
www.kellehampton.com/ Kelle
http://www.theblessingofverity.com/ Susanna, veritysmama
http://jillellingson.wordpress.com/ Jill, LadyEowyn
www.triponthemtrain.blogspot.com/ Robin, triponmtrain
http://billandria.blogspot.com/ Ria,billandria
http://www.thetaooftulips.wordpress.com/ Nicole, edamommie
http://www.swissfamilycarter.blogspot.com/ jakeswife
http://www.unforeseengifts.blogspot.com/ Erin, eringal
http://www.mamamommyme.blogspot.com/ meriah, doozee
http://welcometoourhouse-myjournal.blogspot.com/ Sandi, Dragon73
http://www.blessingsandglory.wordpress.com/ Libby, *MotherHen*
http://wwwourunexpectedjourney.blogspot.com/ Adrienne, sophie&blitz
http://gettingdownwithnate.blogspot.com/ Crista, VTMommaBean
http://tenderspringshoots.blogspot.com/ lambfox7
http://theupsideofdownsyndromethatis.blogspot.com/ Signe, GABGAV1
http://yomammamamma.blogspot.com/ Missy, viviannesmom
http://bloggerssyndrome.blogspot.com/ Carolyn, kiwiaussie
http://www.hapagirlhapafamily.blogspot.com/ Sonia, navywifemomof3
www.thegreskofamily.blogspot.com/ Katie, NewMommy_Jack's

An Inspiring Week in Kansas City

2010-03-25T11:21:00.000-07:00

This weekend, I was invited as a Board Member of DSAGC to attend the Affiliates in Action (AIA) Conference in Kansas City, MO. The event was exhilarating, exciting, inspiring, overwhelming, and fantastic. I think sometimes in Cincinnati it is easy to lose sight of the fact that, thanks to the efforts of so many, we are in the enviable position of having paid staff members who help us support people with Down syndrome - the adults, children and their families, as well as the circle of support around them, including medical professionals, educators, social workers, specialists and interventionists that work with them.

The purpose of AIA is different than any of the other National Down syndrome Organizations (and I’ll write about how I view all of them and their mission at some point soon.) AIA has a sole purpose of allowing the staff and volunteers of the well over 250 local Down syndrome affiliates across the United States to sharing the wealth of information, best practices, and efforts within their organization with each other. AIA became an official National Organization at this meeting, and Connie Hutzel is on the Board as secretary, representing Cincinnati.

The Cincinnati Team

The team from Cincinnati that went to the event included Janet Gora, Pam Rieke, Connie Hutzel, Molly, Phil and Mac Mattheis. I really enjoyed getting to know Pam, who runs our Adult Matters Program better. As the newest member of the DSAGC staff, until this trip I didn’t really know Pam. After spending time with her, I know how committed she is toward finding excellent programs for Adults with Down syndrome (like this program I heard about at AIA). She is a lot of fun to be with, and a person with a lot of positive energy and ideas for making our program (which I learned after being at the AIA meeting is very unique) the leading program for adults in the country.

Prenatal Testing and Informed Consent

I spent a lot of time with several individuals who are part of the informed decision making task force, including Mark Leach, Stephanie Meredith and Nancy Iononne. I had never met Nancy before the AIA meeting, but have communicated with her just about every day, several times a day for the past two years. Nancy and I are “Group Owners” of the Baby Center Down Syndrome Pregnancy Board. This free, online message Board is a place where mothers who have increased risk of having children with Down syndrome or mothers with a confirmed diagnosis come to learn more about Down syndrome. We deal with a number of the fears these new moms have, and help them to sort through those feelings. We also help them navigate the new and unfamiliar world of heart and medical conditions, issues of race and religion and marriage and family and the impact a child with DS will have on their lives. We also began hosting a monthly conference call where the mom’s dial in and discuss what they are going through.

The Adoption Program in Cincinnati is a most valued resource to everyone involved. Robin Steele’s work is admired so much, and pointed to across the country as something that all of the Affiliates appreciate.

There were several sessions, including one by Brian Skotko where the issues of what sort of supports and information will need to be in place nationally and locally once a non-invasive prenatal test comes onto the market. Nancy and Stephanie are working on a publication that is intended to be a “What to Expect When You are Expecting,” only with an emphasis on the factors that come into play when you are expecting a child with Down syndrome. There is much work to do with education Doctors, Nurses, Hospitals, geneticists, and perinatiologists nationally and locally. We are lucky we have a very strong support system in the person of Martha Ostendarp, and it is great to know that we will gain more insights from the other groups as to what is working and being done by other groups across the nation to supplement the things that we are already doing well locally.

Best Practices in Education

I attended a session on a program that is taking place called Partnership in Education by Amy Allison, the Executive Director of the Kansas City group. They have developed quarterly breakfasts with what they have termed “Down Syndrome Specialists” in the school districts throughout their region. The educate these specialists in best practices working with children with Down syndrome, and uses these opportunities to get to know key staff and identify people within each district who can be helpful and open to the messages of the Down syndrome group. They’ve also seen a shift amongst school districts to where they view the local Down syndrome group as a specialist, and a resource. It seems to have built a lot of good will between the association and the schools, and is a program that they have been working with other groups to develop across the country.

The other person I heard at the event was Sue Buckley speak about how she and the DownsEd group have been studying the specific ways that people with Down syndrome learn. She talked a lot about the See and Learn program that Orange County offers for free on their website (www.dsfoc.org/learning_program_registration.php), as well as a symposium they had in Kansas City a few weeks ago. I really like that they have evidence based research on their site available. If you aren’t familiar with their work, I suggest you learn more (http://www.downsed.org/)!

Research and Funding Research

Being relatively new to the world of people with Down syndrome, I was shocked to learn how low the funding for DS research has been, particularly when it comes to the National Institute of Health as it compares to other health issues. A woman from the NIH came to speak for the first time in recent years. Her advice to the DS community is to look toward the efforts of the Autism community for cues on how to mobilize and address the government to demand more research that will benefit the medical needs of Individuals with Down syndrome. There are MANY areas of DS research that need to be addressed, particularly as the population of individuals with Down syndrome is aging. Much is to be learned that will benefit not just the people with Down syndrome, but also the rest of us with the usual number of chromosome. Questions about Alzheimer’s, why people with DS tend not to get solid tumor cancers the way the typical population does, what factors influence cognition, and why do some children with DS get leukemia and have severe heart conditions and other’s don’t are just a few of the types of issues that could be addressed with good research. Funding for research (and lobbying) is a huge issue. I think, though, that there is an exciting groundswell of action that is brewing around this. If you are interested in this area, there is a great need for assistance.

Media

I heard Patricia Bauer speak about the media, social media, and how people with Down syndrome and all disabilities are portrayed in the media. The good news is that there is a shift from pity and overcoming adversity towards issues of justice, fairness and civility. There are many ways individuals locally can work to help shape the conversations – from home and from their computers. Patricia’s site is www.patriciaebauer.com/.

Money

I was struck by how much the great success of our local Buddy Walk influences DSAGC. Talking with people across the country – even individuals in large metropolitan regions with a lot of people – I realized the vast difference there is in having a paid staff who can execute programs vs. relying on parents to do the vast work that can be done to benefit our community. We all need to continually work toward maximizing what we can do with the Walk, as well as look toward creative and interesting ways to develop relationships with people who may not know anyone in their lives personally with Down syndrome, but who can be inspired by people with Down syndrome to the point where they are willing to give of themselves and their pocketbooks. I think that AIA is going to help us as an organization learn to be better at seeking out people who would be interested in planned, long term significant gifts to DSAGC that can allow us to dream big when it comes to supporting people with Down syndrome. Other areas are doing WONDERFUL things in terms of facilities built that uniquely support children and adults with DS, creating fantastic events that inspire their community. We know that people with Down syndrome can inspire. I think we need to challenge ourselves to dream big for Cincinnati, and be as smart as we can in our development efforts.

Our Local and National Government

There are many issues right now that are in front of our elected officials that can impact individuals with Down syndrome. While we were at AIA, we met with the members of ODAN, which is the Ohio Down Syndrome Advocacy Network. It was amazing to me how many local group’s met up with other’s from their state for the first time at the AIA meeting. ODAN has been in existence for a few years, and most recently has taken a map of the state of Ohio and agree who is covering which County so that there is not a single county that isn’t served by one of the groups. We learned about lobbying efforts that are coming up. Also learned the good news that there are FINALLY enough signatures for a Down Syndrome License Plate!

Nationally there are issues like the aforementioned research funding, programs that will allow families to save money for their children with Special needs, the restraint bill, that are on the horizon. This is an area where the voices of individuals with Down syndrome and their parents and loved ones can make a difference.

Karaoke and More

So, now you’ve read what I personally did at AIA. Janet, Pam and Connie all attended different sessions than I did – imagine how much information we all received that we can share to improve DSAGC. The last night of the event featured AIA Idol – which is the Affiliates in Actions tribute to American Idol. I decided to sing – knowing that a trip to next year’s AIA was the prize that was going to be awarded. Janet Gora, our very witty and fearless leader, Dr. Brian Skotko, and Joe Meares from the D.A.D.S. Group all were the judges. I wish I could say I won, but I tied with a woman from Dallas. We had a sing off, and she won (a contributing factor being that there were about 20 people in the room from Texas.) I got second place and a $100 gift card that is now in the hands of Pam to use for the Adult matters program. I have assurances from Janet that next year (if I’m lucky enough to attend AIA again) we will stack the odds in my favor by brining many more people from the state of Ohio to AIA.

On Sunday, we got to attend the World Down Syndrome Awareness Event in Kansas City. They had a WONDERFUL turn out for the event which featured adult advocates telling about their lives, Radio Disney, prizes, vendor booths, face painters and more. Kansas City was a wonder host city for this event! I had such a great time from the beautiful opening reception to the last minute of the World Down Syndrome Day Event!

What Can YOU do to help people with Down syndrome?
What DO YOU do to help people with Down syndrome!?
There are so many ways to help - some involve time, some involved money. I strongly suggest that if you haven't already, contact your local DS group and ask what they need! I'm happy to help connect anyone with a group if they are interested.

What do you do right now in your area? What programs do you think are the best where you live?

Thanks for reading about my trip! If you can't tell, I left inspired!

World Down Syndrome Day

2010-03-21T09:44:00.001-07:00

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Location:Main St,Kansas City,United States

AIA - Patricia E. Bauer – Media Outreach 101: Ten things you need to know to work effectively with the media

2010-03-20T14:34:00.001-07:00

www.patriciaebauer.com

If you don’t follow Patricia E. Bauer and love someone who has Down syndrome – I strongly suggest you start!

This afternoon I heard Pat talk about how we can work with the media. Things are changing rapidly related to the public conversation about disability. We are getting, in Pat’s words, beyond themes of pity and overcoming adversity, encompassing issues of justice, fairness and civility.

She has a list of iPhone apps on her site, as well as a lot more information.

She talked about the situation with Rahm Emanuel, Rush, Sarah, Family Guy, Bill, and Andrea…

Look at when relevant issues are taking place in the media and find ways to address them.

Help journalists tell compelling stories about real people with Down syndrome. Fundraisers aren’t the best type of stories to try to pass off as News.

Don’t present stereotypes – use people first language…avoid angels or victim mentality…they are fully realized people with rights. Don’t ally closely with a party, but look at the acts of those people.

Too many mixed message to our government cause nothing to happen.

Media isn’t up to speed on our issues, and they don’t have a lot of time to get there. We can help them do their jobs well. Write press releases – help them.

Get pictures and videos to tell your stories. Figure out who would be available to participate and who would be good?

Could AIA put a virtual media library to share ideas of what has worked in local areas?

As a trade group, have three individuals who can address something immediately and how to address the media.

And she gave some good information about managing interviews!

AIA - David Egan

2010-03-20T14:19:00.001-07:00

David is a Self Advocate who is going to be on the Board of AIA! I really enjoyed some of the questions he asked during the session on the Media.

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Location:W 22nd St,Kansas City,United States

It is fun to come to Down syndrome events like this, because you get a chance to see adults with Down syndrome. This morning, at one point the two adults with DS sitting at breakfast with me were both texting on their cell phones!

AIA - Dr. Brian Skotko, DS Prenatal Testing

2010-03-20T09:28:00.000-07:00

Lucky to hear one of my favorite speakers on this subject that I feel very passionatly about talk this morning!

Prenatal DX of DS
Screening vs. Prenatal DX
Appetizer vs. Entree

Nancy asked if there is a place that can show what the different things mean. What do all the numbers mean? What is the bottom like? At the end of the day - only the doctor can tell you what it means. Bottom line it is just a chance - talk to the Doc about your specific #'s.

They look on CVS or Amnio under a microscope to decide that yes they do, or no they don't have a child with DS.

Options - some want to know, some want to straight to amnio or CVS - they have risk, even if it is a small risk.

One out of 400 times the Amnio will cause the miscarriage. Many women have lost their pregnancy and found out that the baby didn't have any chromosomal abnormality.

Allele Ratio Analysis
www.artemishealthing.com
Take blood from the mama and see cell free DNA of the baby. Yes, we can. How do we know if it is moms, or the baby. Are there genes you only use as a fetus. If they find one only as a fetus, you know it is coming from the fetus. Is there one only found on the 21st chromosome? Yes. Find the needle in the haystack - if 3 copies light up, then you know you have a child with DS.

Allele Ratio Analysis
www.artemishealthing.com
Sequenom - Blood coming from the mom's arm - is there accuracy? Right now it is being questioned, but they think it will be accurate. Performed in the first trimester. Cost will be $2000 - for insurers will be $700
Only will be Trisomy 21 - not reliable for translocation or mosaicism. Results will be given - you do, you don't or we can't tell. They plan for the only DS for now, but more later.

Shotgun Sequencing
Risk - a simple blood test - a ways to go - possible for other trisomies.

You will have a definitive blood test with 100% accuracy.

Are mother making informed decisions?
non-directive counseling, accurate information, up to date, balanced information.

81% of medical students report they get no clinical training re: DS
45% of fellows get barley adequate or non-existent training
28% of AGOG fellows felt they were well qualify in prenatal genetic counseling

Guidelines for delivering news prenatally and postnatally have been agreed recognized, but aren't signed off on.

We need to make sure the guidelines are in the hand of their OBs? They can talk about research and evidence to their own doctors about it.

Brighter-tomorrows.org - interactive online simulation that allows medical professionals to view patient-doctor sessions...

Training was signed into law for hte Prenatally and Postnatally dxed conditions awareness act.

Two states have a local version of the law - Missouri and Virginia.

Gold standard information about prenatal testing for Down syndrome. canisterbooks.com These packets should be offered to every couple with a prenatal DX.

Public Education - NDSS - My Great Story Campaign - in print, and commercials with people talking about DS.

Boxed lunches for the med schools &

Get a grand rounds sessions - do a lecture on Down syndrome - bring in a professional.
Send research to pediatrics and OB/GYN sites.

Does your local group hospital utilize the canisterbooks info?

This was a great session...

Me with the DSAGC team

2010-03-19T16:46:00.001-07:00

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Location:W 22nd St,Kansas City,United States

AIA - Event Based Fundraisers for Down Syndrome – Michelle Whitten – ED of Global Down Syndrome Foundation - Colorado

2010-03-19T14:51:00.000-07:00

This presentation was REALLY exciting to me!!! My friend Joe could really help DSAGC pull this off in Cincinnati! let me know if you want to help me make this happen in Cincinnati!!!

This was about the Be Yourself, Be Beautiful, Jet Set Fashion Show!

Presentation was given by Sophia’s mom is Michelle. They are new – 501©3

Fundraising and advocacy arm of the Linda Crnic Institute for DS – Government advocacy and Awareness building.

Government advocacy – want to increase NIH funding of basic research for people with DS.
NIH Did increase a million dollars. DS was largest decrease of any NIH funding.

Mentioned Jennifer Bekins as a speaker at one of their events as a “World Renowned Expert!” We love Violette’s Speech Therapist!!!

Be Beautiful Be Yourself Jet Set Fashion Show

http://www.coloradojetset.com/

How do we begin? Vision, goals, awareness goals, Anchor donor support, good volunteers.

Free/low cost events and do a high end events…

People who can pay should pay, if they can’t they shouldn’t.

Geographical reach.

Homework!
Understand existing events and what will supplement
What other events are in the community that service people with IDD or overlap with our format?

Give yourself a year from concept to implementation if it is a large scale event

Focus on your Unique Selling Proposition.

Financial Committee Chair. Need up to date information.

In year cash donations are helpful.

Get in kind donations – Venue, food, drink, Valet parking, Speaker/Talent Fees, Silent Auction items, Life Auction items

Keep costs to 25-35% of the revenues

Awareness is the centerpiece of a fundraiser most of the time.

Show off people with Down syndrome front and center.

Aim for low hanging fruit.

Measuring your success. Financial success, attendance rates, awareness building measures.

How often to have the event.

The Fashion show

ColoradoJetSet.com

85-90% of people in the room didn’t know about Down syndrome.

Typical Benefit. Table sponsorships. Fashion Show was great.

Very Successful Event.

Hotel was a better event vs. an air hanger

2008 – sold out 800 attendees, $450,000
2009 – sold out 1200 attendees – lots of comps
Reached goal of 1,000,000

Created an Advocacy award – gala plus theatrical event

Will partner with 5 other city’s.

Developmental Disability awareness day a the zoo.

Make our kids and adults the priority and why we should be the recipients of our philanthropy. They are shocked we are the least funded by NIH. Attract people outside the DS community.

Think about who you are talking to they will not be PC and get it…eventually. Inspire vs. creating pity!

How to get local celebrities? Chad Ocho would love this sort of thing! Keep them as a part of this!
Be Beautiful Be Yourself Jet Set Fashion Show.
They can bring the retail sponsor.
Children’s hospital

Selecting the Ambassador – we need the ambassador as someone who is bringing things to the table. He has a HUGE Family with tentacles in the community into the world.

The kids make the audition like a fashion show. The parents have to spin it correction. Typical kids go through that all the time. Have two understudies.

Donor and Data management. What sorts of tools do you use? Everything is volunteer. Small numbers. Underestimation of our own ability. Never spend more money than you are making. Under promise and over deliver.

Find someone with skill set – big foundations…looking at software in constituency management. Donor Perfect. They have invested time to looking at it. Convio common ground software…they want and event modal. Other thing that it will do give everyone credit for referral credit and soft credit.

Sage is the accounting piece.

Auctions – auctions have plants so they will never be embarrassed.

Give you the table but save the money for the live auction – gives you the minimum $ for the bids…

Auctioned signed shirts. Don’t do live stuff that they don’t know about before the room. Dinner with the Sherriff. Round of golf with a celebrity.

AIA Presentation - Frank Buckley Practical Support For EI and Education

2010-03-19T14:48:00.001-07:00

Talk about the US organization and what is happening with DownsEd.

They are developing and publishing resources, provide services.

They want to create a world where knowledgeable ad supportive families and communities nurture the individual potential of every child with Down Syndrome.

Research + Support = Improved outcomes

Research drives everything else and has a high long term impact. The outreach is the publishing.

They have 100,000 beneficiaries – 80% are online. 6000 active customers in 70 countries.

Resources:

Short books – research summaries and practical guidance
Web editions are freely available on Down Syndrome Online
Education and development
Adult Issues
Health (due late 2010)

www.down-syndrome.org/research-practice

www.SeeandLearn.org

Language and reading, speech, memory and numbers programs under development…free programs are available at the site.

There is an online store – www.store.downsedusa.com

Down Syndrome Education Conferences – focused and has tracks for all ages – also has Web Seminars and Advice Groups. Times aren’t great in the US right now.

Research – they are doing an ongoing randomized controlled trial of a language and reading intervention designed for classroom use.

Looking at speech and language, learning and memory, reading, number and math, social skills and behavior.

See and Learn program – want to produce step by step supports – 4 strands of support – At home, Together (support groups), At School, Professional

Tika – could we do a See and Learn East side playgroup?

Q&A – Find a university in the area that would consider accreditation program.

Doing a study with a group with Williams Syndrome.

After you come into a an area – professionals are better equipeted – families are better equipped to help everyone do better. Conference is imparting knowledge and setting people up. On going support are the things they are evolving into an ongoing relationship with the group for supporting early learning programs. Looking at how best to do that. More groups are getting more hands on in providing these services. What is the best model for starting early learning groups? What are the best ways to support after the conference is over.

See and learn program – could people log in and look at the program. This would be a great resource for parents. Starfall.com Having a repository would great for schools, etc.

Is there a training could do locally – train the trainer sort of program? Find a professional in the community who can be advocates of the program - they don’t have a training the trainers and giving them an accreditation.

They need a cascade model – their time is limited. With more funding they can train US people. If we can raise funding to support training the training.

Parents and Partnership program. This would be very valuable. Would identify a DS specialist to get that person trained to understand how to do this. As a community we don’t want to replace services that should be provided by the teachers.

Make sure the tax dollars are used to have best practices – and this is the best practice for DS learning.

Research based best practices – this is the best way to get them to achieve. Get teachers to achieve. More work with national teaching groups for standards for reading and learning for each child.

IEP talk - Ways to give a presumption of need to start with and then fill in with research based supports to fill in the deficits. Is there any IEP guidelines for developing reading/literacy guidelines. There is an IEP Goal Bank – anything as a resource forward ideas to AIA.

MATH - Have they looked into touch math. Sue – not much, they’ve heard presentations. They think it is limited. Math you see. Numicon. Go through the Learning Program to learn about both program.

Austin, TX uses this program one Saturday a month. Getting the data to get national grants could help get everyone access to this. AIA can be a key group for this sort of funding group. The funding model could be a template.

How do you get to the university’s where teachers are being taught to teach them the right way to teach our kids?

Teachers and Doctors look with worst case scenario. Parent has to set the bar high and encourage the teachers to come up.

Value of research related to what do we know about educating people with Down Syndrome is on the website. Not Phonics first. Other parents pull DownsEd research to show what best practices were for IEP. They made it put the research in her file.

Inclusion Data is on the website with the Down Syndrome Research and Practice - go to site with research papers. Volume 9 Issue 3 has Inclusion information – includes data from this study.

AIA - Mark Leach – Why Your Group Should Have A Medical Outreach Program And What You Can Be Doing Right Now

2010-03-19T14:46:00.000-07:00

This was a great session

American College of Obstetrics and Gynecology said that everyone regardless of age should get prenatal testing. Doctors changed their behavior to reflect this.

All doctors are offering screening tests to all women in the first trimester. This is the new standard of care. Reason given is “providing the patient with the potential for earlier diagnosis and safer treatment options”

There are a wide range of tests offered and Mark talked about all of them. Sequential screening is presently 95% accurate, Integrated testing is 96% accurate. All key off of the NT screening for reliability factors.

Only way to know for sure is Amniocentesis or CVS. England estimated 2 unaffected fetuses miscarried for every 3 diagnoses with DS. America, Estimated 3 unaffected fetuses miscarried for every live birth of DS.

All of these tests may be irrelevant because of Sequenom. They claim to be working on a non-invasive diagnostic test. The market judges a demand for this test. They mishandled the data, and stock price dropped and SEC investigation took place. They got rid of key people and got sued, etc. settled with shareholders. If they get it to market it will change forever the way pregnant women are tested for DS. Other labs are developing tests.

Pre-implantation genetic diagnosis another trend. Down syndrome is the tip of the iceberg – they will look for Fragile X, William’s Syndrome, etc.

Mother’s with prenatal DX who had pretnatal DX had a better experience. Upside is those moms that continue are wonderfully prepared.

Studies are conflicting as to if there are more or fewer births with children with DS in the US?

California study: Half screen positive oped for amino. At least 61.4% had an elective termination. 1326 expected number of live born DS. 711 live births.

More pregnancies with Children with Down syndrome – more born than historically, but still not as many born as you would expect due to the larger number of mothers of advanced material age.

This is an information issue, not a termination issue.

On the woman’s side…issues with deciding to undergo prenatal testing. Prenatal testing is presented as routine and not requiring an active decision by the patient.

Medical Outreach is KEY. Informed Decision Making Task Force is great. Nancy from the DS Pregnancy board and Janet Gora are on the committee. This is a GREAT group and looking for more outreach…

ACOG Practice Bulletin #88. After the dx of a chromosomal abnormality, people should get accurate information to the patient. They should get this. We want to keep them within their standard of care. Refer to local or national parent support organizations.

We aren’t pro-life/pro-choice, just all about helping them get the best information.

Where is the 80-90% of the termination rate coming from?

How many women if you get a screen positive do not go on to get an invasive test.? In the California study HALF do not get the invasive test.

Looks like the coasts have a much higher termination rate, can be as low as 50% based on little studies of small areas.

Kennedy Brownback bill signed into law in 2008. Purpose to increase referral to support services, provide up to date information about conditions, ensure patients receive information about the accuracy of test. Now it has to be funded.

A woman attending the session told of a genetics specialist in her area who not telling balanced information about DS to her patients, and referring to other states for termination. Mark presented some great information about research based information about the positive things that go along with DS.

Interesting study that shows women and men who terminate because of DS have high levels of post traumatic stress symptoms and symptoms of depression.

For Affiliates – make medical outreach a priority – have a board/staff member responsible for medical outreach, designate funds from fundraisers, check out the beautiful materials at http://canisterbooks.com/outreachprogram.php for start up information.

As Mark said - Cincinnati has the best materials!

www.brightertomorrows.org (Spanish translation available)
www.brighter-tomorrows.net (physician portal)

http://canisterco.com/books/index.html this is the best, gold standard book
http://giftsds.segulllah.org/

Parent advocacy groups really matter when it comes to this subject!

AIA - Teen Talk and Other Social Skills

2010-03-19T14:44:00.000-07:00

Teen Talk and Other Social Skills
Building Courses for Teens and Young Adults with DS
Amy Van Bergen
Typically, these are 6-8 week programs geared toward 18-Young adults
Place with a rec room, Wii game, etc.
Doesn’t all have to be structured.

Fall session 6-8 weeks. Spring Session 6-8 weeks. Four weeks is too short.

Who will facilitate it?
Most expensive WOW-em 8 week Teen Talk course will cost no more than $1000 – includes facility rental, paid instructor (s) refreshments, materials, etc. Certificates, etc.

They use a self advocate as an instructor to grow leadership amongst their self advocates.

Curriculum Ideas: Manners, Dating, Making Friends, Grooming, Coping with stress, Who am I? Relationships with Family

Ends with a sit down dinner and dance.

Instructor can’t be a parent who is participant who is doing it. Not parents are better.

You have some parents who have never told their children they have Down syndrome. Consider behavior issues. Provide opportunities for parent interactions and share curriculum with them.

Support those with the most complex needs through this.

Autism groups are all about social skills and building appropriate relationships. Connect with the Autism groups.

Easy grant yes if you can collaborate with other DS groups.

Time is generally about 1-2 hours. Weeknights seem to work better. Sunday afternoons can be ok…

They do a one time advanced training for participants.
They do it in one Central location.

How do they include non-verbal teens? Name Tag…part of peer supports are key.

Is there a teen club in Cincinnati?

Program is geared toward 18-25 year olds.

Home Depot Workshops

These are held in classrooms. Have a meet and greet that includes the parents. Let them know the curriculum, etc. What sorts of conversations they have about are dating and sexuality – appropriate is different for different people.

AIA - Sue Buckley "DS Research - Past, Present, Future"

2010-03-19T07:01:00.000-07:00

These will be stream of conscious notes…

Listening to Sue Buckley

Sue Buckley gave the Plenary Session. She gave a history of research. Speech and language – Signing is a benefit as it makes up for the gap between understanding and expressive language. Kids with DS want to communicate (v. kids with Autism)mso they will use gestures to get their point across. Teenagers – know a lot of vocabulary – lots to say but can’t say it clearly. Causes?

Hearing loss plays a part. Slow vocabulary learning may delay grammar. Difficulties with verbal short-term memory. Early speech discrimination? Speech motor issues.

Typical Kids need 200 words in their to start to use ing and possessives, etc. Big vocabulary – need to accelerate this. Need to teach vocabulary quickly to get into the expressed grammar. They look at typical development and compare the critical points of intervention.

Hearing all the sounds in words is critically important.

Working memory
Central Executive
Verbal short term memory – helps make sense of it
Phonological loop – holds the sentences

Episodic buffer

Visual sort term memory – this is the store for keeping visual memory
Visual spatial scratchpad

Working memory – helps you understand what is coming next. DS delayed working memory has an issues with school. We can do something to improve it.

Increase in memory rates helps by learning more vocabulary. Helps your memory system.

Sue Gavocol at York – has some good research – Google it

Visual memory skills are better than verbal. An issue is phonological loop deficit. Speech discrimination with babies. Memory training games are very helpful. Memory training – development new pilot with kids with DS – developed in Sweden.

Reading is a strength. Word reading is a strength from 3 years old. Reading often better than mental age or language measures would predict. Wide range of achievement with reading skills commonly around 7-8 years level but some (10%) reading at age level. Reading comprehension is usually 6-12 months behind word reading ability – memory issues and language delays.

Our kids read by sight longer than other children. Reading instruction may improve language and working memories.

Reading leads to better spoken language.

Boost reading, spoken language or working memory and it boosts all the others.

They learn skills in the same order – sometimes they get out of phase at different order.

Need to get best practices into classrooms. Our kids need to be taught differently. Notion that we’d teach our kids reading earlier isn’t embraced. Special ed teachers have a hard time changing as well. We need more evidence based practice. Measured interventions need to happen.

Need to find things were we can practically put things in practice. Raise expectaions. Target speech language from birth – support all learning visually, train working memory, teach reading and use reading to teach language.

I'll fill in more later!

Some links – www.donwsed.org www.donwsed.org
Research – www.down-syndrome.org
News: blogs.downsed.org/downsed
Sign up for e-mail: blogs.downsed.org/email
Twitter: twitter.com/downsed

AIA - Me and Nancy

2010-03-18T17:02:00.001-07:00

- Posted using BlogPress from my iPhone

Location:Grand Blvd,Kansas City,United States

Live from AIA

2010-03-18T10:04:00.001-07:00

I'm here!!! Here's the action behind the scenes...

- Posted using BlogPress from my iPhone

Location:Main St,Kansas City,United States

Who I Was Then; Who I Am Now

2010-03-13T19:21:00.000-08:00

One of my favorite Down syndrome threads on any message board asked the question who were you before you had your child with Down syndrome, and who are you now that you have them...here is my response:

I'm a person who believes that there is a plan, and that there are reasons for everything in life, but you don't always see them when you are going through them.

I've always been drawn to the most interesting people in the room - not the most typical - the ones I consider most interesting. One of those most interesting people in my life is one of my best friends. I met him in college. He is fun, and funny, and he grew up with two permanent foster brothers (and a sister for a while) with Down syndrome.

I have a nephew (who is a genius in his own special way) with a condition similar to Muscular Dystrophy. My cousin's little piano playing wonder girl has DiGeorge syndrome. I have a co-woerker with a little boy with William's syndrome. I have a friend whose child had neuroblastoma (cancer of the stomach discovered at 8 months old.) A neighbor has a child with CP. I have an uncle with an adult son who is autistic. Disabillity was, if you can imagine, "normal" in our lives.

But, when I got the odds that Violette had a 1 in 16 chance of DS, I was shocked. I thought it would be the worst thing in the world. I had always considered myself the luckiest, most blessed person I knew. For a few weeks after she was born I questioned that.

But I went back to my favorite four words of the Lord's Prayer "Thy will be done" and realized that a person as lucky as I was, as blessed in this world as anyone I've ever met, wouldn't be let down. And I started to think about things.

Every day, more and more I realize that Violette being that 1 in 16 was just another way of God telling me how much he loves me. And I know that having "the 1" is indeed the lucky one - not those other 15 who don't have someone like her in her life.

I can't say that she has changed me - I'm still fundamentally the same person as I was before I had her. I can say, though that she's totally reinforced what I thought before I had her - I am the luckiest person in the world.

Potty Time

2010-03-05T12:17:00.000-08:00

I posted this little video of Violette going potty over on the Baby Center Potty Dance Contest and she won! Her little potty going self was up on all of the Community Home Pages for everyone to see! The video got over 1000 views that day, which was pretty cool.

Video aside, we are still a LONG way away from Violette being potty trained...and I have no idea when kids with Down syndrome typically get started, but...here's what I can tell you we did to get started...

1. I tried to play on the visual nature of Down syndrome. So, she has watched me and my two other girls pee on the potty more than once. I know that sounds gross (and my 10 year old didn't just love it, lol), but I thought that seeing what she was supposed to do was a good idea. I also when I was doing it I would sign WATER and IN the Potty as soon as I started peeing.

2. I have found that she likes it to be very quiet, and I'll say things like "Violette is going to go pee pee in the potty" then I'll say "shhhhh, let's listen for Violette's pee pee go to IN the Potty" and I'll sign it too.

3. I have a pee pee song that we sing (to the tune of Twinkle Twinkle)...

Tinkle Tinkle Little V,
How I like to see you pee pee,
Pee pee here and pee pee there
Make a Little pee pee everywhere
pee pee pee pee Little V, How I like to see you pee pee.

4. We have a big book collection and video collection. I have titles from my girlfriend and my other two girls that she sees and watches.

5. Sometimes we play with Elmo or Dora in the bathroom (little bath toys, actually) and I'll ask her to show Elmo (or Boots, or Dora) how to go potty. I'll pretend to be them. She likes to pretend that Boots or Elmo or Dora are going on the potty (she'll hold them over the potty and say "pSSSSSSSSS" - you can hear her do it at the begining of the video.) Seems like sometimes she'll do things for them that she won't do for me (stinker).

6. Take is slow when you need to - she didn't like sitting on it for a while, so I just encouraged her to sit on it with her pants on, then tried again later.

7. Lots of "Big girls go on the potty. When you are a big girl you will go on the potty too!" talk.

8. The biggest issue I think we will have with her is having her tell us when she needs to go (requesting skills are apparently weak in our kids). I got some good advice to get a picture of a potty (or her on the potty) that she can grab when she needs to go. I'm going to laminate some and start taking that picture with us whenever I put her on thinking she needs to go.

9. This is from my other kids - I would tell them that their pee pee LIKES to be in the potty. I've heard some kids think that they are giving a part of themself away by giving up the pee in the bowl, so if you say that is where the pee pee is happy, or where it likes to go, it can help that emotional barrier.

10. She is private about it (which surprised me.) When she wants to poop on the potty, she will cover up my eyes with her hands, or bury her head in my shoulder.

Wow, who knew I had this much to say about potty! I think they all of our kids develop and meet thier milestones on their own timeline, in their own way. I can tell you with no uncertaintly that I NEVER would have dreamed Violette would be doing this well with the potty at this age!

One Year on the Baby Center Down Syndrome Pregnancy Board

2010-02-27T19:47:00.000-08:00

A year ago today, I became a "Group Owner" over on the Baby Center Down Syndrome Pregnancy Board. Basically, the board is for women who are either given a positive prenatal screen for Down syndrome (like I was), has markers for Down syndrome or have a child who will be born with Down syndrome as confirmed by and Amnio or CVS test. All of the women who are on the board have decided to proceed with their pregnancies. Statistics show that between 85-95% of women with a positive diagnosis of Down syndrome terminate their pregnancies. This board is for the ones who make the decision to bring their babies into the world.

It has been a wonderful year, and I've learned a lot - probably learned more than what I'm able to share, in many ways.

First, almost every woman who learns that they may have a child with Down syndrome is struck with the most horrible fear they have ever felt, or ever imagined feeling. I think this happens for a number of reasons. I think we are hardwired that as a mother, having something that you perceive to be "wrong" with your child to blame yourself. You have a feeling of fear, guilt, sadness, fear, uncertainly, self doubt, fear, anguish, terror, misery, and a desire to flee the situation.

Most of us also come face to face with a prejudice we never imagined that we had. And then we have some shame for ourselves, and hate the part of our self that could on some base level reject the child that most of us so wanted to have - just because they have Down syndrome. So then we have to deal emotionally with that raw feeling of self loathing for that prejudice.

There is also the intense concern over medical issues, the ones they know, and the ones they don't. Kids with Down syndrome have many more heart issues, and learning your child has one is overwhelming. The fear of putting a child through a (or several) surgeries is one that is perfectly reasonable. These moms learn so much on the board in terms of what this aspect of parenting will bring for them. The good news is that most children with Down syndrome do very very well with heart surgery. In fact, the medical community has learned many things that have extended the life span of our kids.

They fear for their marriage, they fear for their other children, they fear for themselves. They fear they can’t parent a child with “special needs.”

While many of the moms are dealing with all of the various intense emotions I described above, many are dealing with people who also put additional doubts in their minds. The Doctors some of the women have to deal with are horrible - they are prejudice, ill-informed, have their own agenda and do so much emotional harm to the women they deal with. Some family members also know how to say exactly the wrong thing to a mother. And then there are husbands who are sad, and confused, or rocks of strength who never show any self doubt.

Top all of that off with the cherry that is being completely hormonal due to pregnancy, and PHEW, it is an emotional situation.

That's why I admire the woman to find their way to our little corner of the world. They know themselves. They may be total wrecks, and full of fear and doubt. But they are brave. They are BRAVE. And they seek out the truth. And understanding.

We talk with them. We help them calm down. We tell them that they should try to be kind to themselves. We explain to them that the worst part of being a parent of a child with Down syndrome is the learning about it part. The parenting the child part is easy. The loving the child is easy. The therapy, the doctors appointments are generally, other than certain times - are manageable. We explain to them that the doctors they hear from know about Down syndrome from a text book they read years and years ago. They are as outdated as the (bad) advice they are giving. We tell them that no one knows what any child will be like, or what challenges they will have. We let them know they will still have a nice life, they will still go on vacation, they will have tea parties, and dance, and laugh, and play, and go out to dinner, and read, and be on the computer, and watch movies, and be normal, normal, normal.

And, yes, as a parent your life will be extraordinary to because of this extra chromosome. You will meet (wonderful) people you didn't know, you will learn things you didn't know, you will go places you wouldn't have, you will have your eyes open to ignorance and prejudice, and you will fight it. You'll have an extraordinary journey that you wouldn't trade for anything.

It is so hard when mom's get that diagnosis not to scream "YAY!! Good for you! You will learn that this life is a good one and this child is going to be so good for you! You are so lucky lucky lucky to be joining our club." Instead, we give them a virtual hug, let them ask question, give them support to feel the things they are feeling, and work through their emotions. We know they will get to the other side, where we are. I've seen so many moms go from being a total wreck to being totally in love.

One of the other co-owners on the board, Nancy, is so wonderful. I learn everyday new things from her about compassion, Down syndrome, hearts, parenting, and support and so much more. What a great resource she is to so many of us. Her little girl inspired me after Violette was born - I saw a picture of her with her sisters, in her bathing suit and the sweet and silly smile on that pretty little girls face let me see that I had a lot to look forward to with Violette. She is an amazing person, and one of those special people I talk about who I’ve gotten to know through Miss Violette.

In another post in the future I think I’ll write a “best practices for mama’s with a positive screen” post…this is getting so long now I’ll save it for another day.

I wish we didn't need to have this board. Really, I do. I wish everyone could hear the words “You baby has Down syndrome” and jump for joy, instead of this sadness. It is personally rewarding for me to be there, at times emotionally exhausting (there are times I feel like I'm reliving my initial emotions, and that can be hard), but so needed and I get so much out of doing it. These brave women need a shoulder to lean on, and they need someone who has been there, done that.

Our little corner of the world isn't a place many women of childbearing years want to end up. But once they find themselves there, I'm glad that little safe haven is in place for them and the beautiful, silly, smart, fun, happy little people who are going to be coming into their lives.

You've got to be taught...

2010-02-21T18:40:00.000-08:00

There is quite a bit of conversation going on in many of the online circles I hang out in about the current Family Guy/Sarah Palin/R-Word/Andrea Friedman/Rahm Emanuel debates.

I have a lot I could say about it - and I may in another post at some point. But all around, I keep coming back to a simple song that applies to almost everyone in all of these debates...

Carfully Taught

You've got to be taught to hate and fear;
You've got to be taught from year to year;
It's got to be drummed in your dear little ear.
You've got to be carefully taught!

You've got to be taught to be afraid
Of people whose eyes are oddly made,
And people whose skin is a different shade.
You've got to be carefully taught!

You've got to be taught before it's too late,
Before you are six or seven or eight,
To hate all the people your relatives hate.
You've got to be carefully taught!
You've got to be carefully taught!
------------------------------------------------------------------
As parents of children with different abilities, our challenge, I believe is to figure out how to teach the truth...and help our peers teach their children the truth, and their children's children the same truth.

That truth being that our children may have "eyes that are oddly made" but they are more like other people than they are different. Not people to be pitied, not people to be feared, or ridiculed or ignored. Just people. Not any more "God's Children" than any one else is. Just children.

At least that's how I see it.

Fuji steakhouse

2010-01-29T17:13:00.001-08:00

The girls love fuji! Violette tried to use chopsticks!!

Location:Eastgate Square Dr,Cincinnati,United States

Mmmm My Sisters

2010-01-23T06:55:00.000-08:00

I'm taking a brief break from blogging about Down Syndrome and life with Violette to welcome some of my Delta Gamma Sisters from DePauw (and other friends I hope) onto my blog.

We found out today a friend of ours (and roommate of mine for a semester) from college, lost her husband today after terrible, hard fought battle with cancer, and we want to show her our support.

Cheryl, a dear friend, has set up a paypal account to accept donations that will will use to provide our friend with something nice, and to buy a Hannah doll for their daughter. I'll post again to let you know what Cheryl and Patty end up doing.

We can't be with her right now, but we can certainly let her know that she and her family are in our thoughts and prayers...click the link below and you'll be able to make a secure donation. Cheryl will get the $$$ and get it to our friend. This is just so sad to me...

If you come on here, I'd love it if you would leave a comment for me and let me know how you are doing! Feel free to poke around the site and learn about more about my life and the wonderful Miss Violette!

Mmmm my sisters couldn't get along with out you now, got along without you before I met you, but I sure couldn't do it now...

ITB,

Missy

Spoon Feeding

2010-01-10T18:33:00.000-08:00

I've been meaning to add this post for awhile...these aren't the greatest pictures (ignore the messy hair, and messy house!), but they will give you an idea of a technique that I found online to show how to spoon feed a child with Down syndrome. Because our kids have lower muscle tone vs. typical kids, it is harder for them to control where that tongue is. This method apparently teaches them where it belongs when they eat. We started it when she first started eating. It worked for Violette, so if you are having issues you might want to give it a try. We only had to do it a few feedings before she got the hang of it.

First put the food on the spoon, and feed it with the spoon edge to the left (or right, your choice):

Then refill your spoon, and put the spoon in to the right (or left, depending on what you did first):

Then, refill, and put the spoon straight in:

That's it just keep repeating that! I hope it helps!

Also adding a link to Maroon Spoons - they seem to help with feeding!
http://www.beyondplay.com/ITEMS/T309.HTM

A Little History of My Pregnancy with Violette...

2010-01-10T08:18:00.000-08:00

Fair warning, this is a long and probably quite boring post...unless it is interesting to you. I talk with a lot of pregnant moms over on the Baby Center Down Syndrome Pregnancy Board, and I think this will be a nice resource to point them toward in the future.

I thought it might be good for my brain to write down everything I remember about my pregnancy - might help some other mama's to know where I was as I was going through things. I was given 1 in 16 odds that Violette had DS sitting on an airplane by myself coming home from a big presentation in Washington DC. I had the Ultrascreen test right after Christmas.

When I was on the plane, I had checked everything through and was just planning on reading a book. I had a pen that I think I borrowed, and an envelope from the hotel I stayed in that was the only thing I could write my thoughts out on.

I'm going to transcribe them here...these are just my initial random thoughts processing this news that my world could be DRASTICALLY changing (that's what I thought at the time - now I feel like I totally over responded to the reality of what was going to happen to our lives and our family.)

First a few posts from right after I found out I was pregnant:

January 2 - The first 13 weeks went by pretty quickly. I'm on pins and needles waiting to hear back on my Ultrascreen test (that tells Downs risk and Trisomy risks)...I may post some pics of the ugly alien baby soon!

-----------------------------------------------------------------

January 2 - Let's all pray that this baby gets a lot of charming personality, cause I don't think it is much of a looker, lol...

January 4: here are my Airplane notes in no particular order...

Love them all
Joe - advice (this was about my dear friend Joe who grew up with two foster brothers with DS)
Be ready for the baby)
I knew/know the risks
Nothing changes, still a person to love and care for
School situation?
Forest Hills is excellent if it is to be. Lili + baby (this was about where to send Lilianne to school - still not decided)
There?
Find out sex? (thinking I'd bond better with the baby if I did - I didn't end up finding out)
Telling Vivianne
Options
Amnio ASAP
Have Steve quit work? (LOL, no one needed to quit work)
Push forward at my job and work like heck
Worse things than a DS baby
Anything else tha could be wrong with the baby
Pray
1-16
1111111111111111 (and then I circled one of my 16 hashmarks - each mark was a baby, lol)
Why would it be me/us?

Because we can deal with it

If the screen shows it, and amnio isn't DS, could baby have other undetected problems?
Telling others at work?
Face it. Deal with it. Like when my friend Joe was in an accident and lost his teeth, this can't be changed, or undone make the best of it (with a heart drawn at the end of it)
Take care of me and Steve
Optimism about this too.
If all of the people I know that have children with disabilities can deal with it (and if my friend's parents chose to) we can too.
Not my plans, God's Plans
Pump the first year if she can't nurse (I pumped 2 years, lol.)
NO BEING SAD. ACCEPTANCE.

From here, I'm posting all of the things I posted on my October 1999 mom's board (The Best Mom's Ever, in case you were wondering - our nickname for ourselves.) We have a very tight knit group of about 20 women who have been together since early in 1999 sharing stories and life with our now 10 year old kids. I shared a lot of feelings and things going on with them that very few people in the world knew other than my husband. I went back this morning and pulled many of the relevant posts to Down syndrome, testing, and Miss Violette.

Pump Up the Prayers - January 4
and I may need to borrow the pink bubble for a few days, Kim...if you don't mind...

The Ultrascreen test came back with a 1 in 16 chance that the baby has downs. YUCK. Ok, enough of that. If the baby does have downs, I figure there are worse things (many, many) worse things that could have happened, so I'll deal with it. And, I'll try to deal with it joyfully. It will still be a beautiful baby (well, hopefully despite it's alien-like features), and just because it isn't "perfect" to the rest of the world won't mean anything to me.

I'm getting an Amnio on Tuesday at 10:00 a.m. to get a final verdict on this.

Factors that go into this stat are my age and Steve's age, as well as the blood work. My friend who is my OB was quick to point out that 15 of the babies who get this reading are fine. I asked her if she looked at the ultrasound pictures and thought "uh-oh" and she said, no, not at all, babies at 12 weeks just aren't that attractive in 3D.

So, the prayers I need are no downs, and if it is downs, that I (and all of us who love the baby) have the strength to deal with it gracefully.

I heard from the Doctor.
Jan 4, 2007

Not mine, but the one who administered the Ultrascreen test. Not sure I exactly feel better, but one thing that would make me feel worse he didn't say.

The Ultrascreen test has two parts. One is the Nuchal Translucency test, and one is the blood test. The Risk Factor is determined by a number of factors. Mother's age, Fathers age, blood test and Translucency test.

My translucency test was in the normal range, but high - 2.9 (http://www.babycentre.co.uk/pregnancy/antenatalhealth/scans/nuchalscan/) and my blood tests was good, though one was slightly low. So, I think the one slightly low reading, and the one slightly high combined with my advanced maternal age gave me this 1 in 16 reading. Everything else about the test (the freaky looking baby, etc.) looked normal for this age. The other thing that makes me feel good is the technician said that 2.9 was a normal reading - but she probably didn't realize I was 40. Oh, they also saw a nasal bone, which indicates no down...

My brother's 3rd little guy had a 6 on the NT test - WAY out of normal range. They (the doctors) thought for sure he'd have problems, but he turned out just fine.

I'm still going to go ahead with the amnio. I don't think I can stand NOT knowing if everything is right if I can know. I'm scheduled for Tuesday at 10:00 a.m. My girlfriend is doing the test. From what I've read, I should have the initial results on Thursday. My gut tells me everything is ok - and the tears I've cried every time I've seen an ultrasound of the baby tells me I'm going to love it no matter what.

Thank you all so much for your prayers. You have no idea how much I appreciate them!

Need an opinion about AB and amnio

« Thread Started on Jan 5, 2007, 4:16pm »

(that's Alien Baby for those of you who haven't read my most recent post).

I'm having second thoughts about the amnio. Here's my logic. They are going to wait till I'm 15 weeks along to do it. Odds are 1 in 16 the baby has Down Syndrome. My being 40 is one of the big factors. The neck thing was the biggest second factor, and it is within a "normal" range if you took the me being 40 out of the equation. Also, in reading stuff, DS babies are small for their age, and my baby is big for the gestational age, and in many babies the hands are stubby with a pinky finger that curves in, and my baby is all hands in almost every image we've seen of it.

I could instead wait 3 more weeks and do a level 2 ultrasound. That would look at all the markers for downs (I've got a bit more about that below). If the baby looks good on all the key markers I'm worried about (which is mainly it's heart which has been beating like a drum every time we've looked at it), I'll just proceed on. If any (or several) of the markers are there, I'll either assume the baby has Down Syndrome and move on, or have an amnio at that point.

You hear about perfectly healthy babies who die during amnio...not that there is any reason that that would be me, but there's no reason that my baby would have Down Syndrome either. And since terminating is out of the question for me, I'm thinking that I should be a big patient girl and wait for the level 2 ultrasound.

Any opinions one way or another???

Markers: Such indications of Down syndrome would be foreshortened thigh and upper arm bones, echogenic bowel, nuchal (or neck) thickening, kidney abnormalities, choroid plexus cysts and structural fetal abnormalities, such as a heart defect.

Later on January 5 - I don't know, we still call lilianne baby schmaby...Alien Baby has a nice ring to it. Of course, everyone will think I'm at terrible mother if I have a child with Down Syndrome and call it "Alien Baby", lol...but then again they just probably won't understand my sense of humor and know i was calling it that before i found out...lol...

Reply #9 on Jan 6, 2007, 12:47am

Here's my latest thinking on this subject:

I'm keeping the pregnancy...no desire to terminate. I feel pretty comfortable that we have the emotional and financial means to care for a child with special needs. In thinking about it, the chances are 93% that this baby is fine. I don't really care much for invasive practices, and if I did an amnio in a few weeks, I would be doing it for ME and MY peace of mind (and believe me, I don't have any problem with anyone who chooses an aminio). I guess my feelings are that my tests were ALMOST normal, but when they factor in my age, that jumps my odds (I asked the doctor what my results would have been if I were 30, and he didn't make a guess). It is so funny to me - I'm in much much much better health than I was 2 years ago when I had DD #2 (and I know that doesn't really impact my old lady eggs, but honestly, my overall health is excellent now). I've been eating right and exercising since March and lost 42 pounds in anticipation of getting pregnant. I wonder somewhat if that weight loss couldn't have screwed up the bloodwork a bit.

My other option is to wait 3 more weeks for the Level 2 ultrasound (at 18 weeks), and if that looks off, then I can still have the amnio after I do it. I'm getting no pressure at all to have the amnio - one of my dear friends is my OB, and she knows how I feel about all this and will 100% support whatever I decide. And I totally trust her to do the amnio - more than I trust almost anyone in the world (I've known her since she was 12 for goodness sake, lol, she's always been one of the most careful people I know!) I just don't like the idea of subjecting the baby to that if there is another way. I don't think any of these tests are perfect, and the good things that we saw (active baby, large for it's EDD, nasal bone, bladder, normal but high range for the nuchal fold test, "slightly" low on one of the blood tests) combined with the fact that DH and I won't terminate makes me think we ought to be more conservative and assume things are ok unless we see something wrong on the Level 2 ultrasound. Does that make sense?

I can't tell you all how much I appreciate your feedback. What on earth would we all do without each other???

Going to the Baby Doctor this morning.
« Thread Started on Jan 8, 2007, 10:28am »

As you guys know, she's also a good friend. I'm telling her to cancel the Amnio. I'm going to get her to schedule the level 2 ultrasound at 18 weeks. I hope she lets me see the little AB today and not just listen to it's heart beating...

Steve and I were joking around last night about Agamemnon Zeus (that's the working boy name, lol) I was on the couch burping for a change. We always laugh that the diet Pepsi I drank with Lilianne is what caused her to have so many curls on her head. Steve said he figured that the Diet Pepsi would cause a boy to have hair on his back. I told him, if my choices are birthing a boy baby with a hairy back and a sweet little girl with Down Syndrome I know one I'd want, lol. I always found the hair on my girls head felt sort of nasty coming out...the thought of a full hairy body is about enough to send me over the edge.

Needless to say, I think I'm at a much much better place about all of this. Still totally scary, but the optimist in me is at a very happy place. I'm really excited about the baby, totally at peace with the decision not to do the Amnio at this point, and know that I'll be ready for what ever comes my way.

Rant/Vent: Testing Results on PG Woman

« Thread Started on Jan 21, 2007, 8:40am

Ok, so as you can imagine, I've been watching the other moms boards keenly to see how testing issues have played out with other moms, and how they've responded to whatever results they are given...

Which brings me to the point of my post. I see people, like me FREAKING OUT about results, when really they haven't changed so much. For instance, a woman on one board was freaking out because her test showed a 1 in 217 chance for Down Syndrome. Her normal odds were 1 in 1000. So her odds went from 1 in 1000 to slightly less than 5 in 1000. But she's a wreck, and is considering having an amnio to find out, to "know."

In my case, I went from a 10 in 1000 chance for a 40 year old woman to a 63 in 1000 chance for a 40 year old woman.

I also don't think half the women understand that a positive screen means something different than a baby with a problem. That woman, if her baby turns out to be "normal" won't have had a "false positive" because no one ever said that her baby had anything wrong with it. They simply are saying that her screen is showing a tiny bit more of a sign that it has something wrong with it than the next 29 year old woman’s baby has.

But, these tests sure help the doctors and hospitals make more money, don't they?

And, I know too that the risks that there actually are problems are real, even for that 29 year old. But I think all in all it seems like they cause a lot more stress than anything. Even the amnio, the gold standard test can have false negatives...

Last thing...how many of us have known someone who has had an ultrasound, where they have been measured and told "based on your measurements, you'll have a 8 pound baby, and the baby comes out 6 pounds, or the other way? And they are telling me that my baby has higher odds for down syndrome because it's neck measurement was 2.9 mm

I'm in a very good place right now in terms of what ever happens with the baby is what was meant to be. And while I'm quite pleased that on my scan on the 20th, they will be really checking this child out, as I think about all this I'm more and more in an eye roll mode about how this plays out to all woman who bear children and do the testing. Particularly for those of us who aren't math people it seems like they need to come up with a really simple way to explain these numbers so you really feel like you are getting apples to apples (and I'm sorry I'm so dumb when it comes to math, but I am...I hear I go from 1 in 100 to 1 in 50, and I freak out a lot more than if I heard I went from 1 in 100 to 2 in 100).

Ok, I feel better getting that off my chest

Steve felt the baby kick!

« Thread Started on Feb 17, 2007, 1:13pm »

The baby is finally getting strong enough to occasionally be felt outside of my belly, and today, Steve felt it! He laughed and said the first of many times I'll have this child kick me!

My big ultrasound is Tuesday at 1. I'm actually pretty excited for it! A big day for sure. I know I could be wrong, but I really think this baby is developing and doing just the same things the other girls did.

My girlfriend/OB said that generally Down Syndrome babies aren't that active, and that the signs that the baby is strong and active are all good ones. This child sure seems like Lilianne so far...

Oh, name-wise I'm leaning toward Violette. I can't decide if the middle name should be Hope (the initials would be VHS which means something to all of us, but won't to her generation), June if that's when she's born, or Anne. Always open to suggestions, friends!

Prayers for us tomorrow, please
« Thread Started on Feb 19, 2007, 9:54pm »

Well, our big ultrasound is at one pm tomorrow.

I'm pretty much at ease about the whole thing, and Steve and I are really excited to see the baby. I know they'll go over her (or him, lol) with a fine tooth comb, so it will be fun to see the parts. I'm still thinking that everything is fine with the baby, and tend to trust my instincts more than that test. That said, the thought of a little person with any sort of terrible heart problem, etc. is a hard thing to even think about. I'll report in as soon as I can...

Missy

I'm back!!!

« Result #23 on Feb 20, 2007, 2:39pm »

EVERYTHING LOOKED GREAT!!!

Hooray!

They went over the baby with a fine toothed comb, and they found NOTHING that looked abnormal. He did schedule me for an Echocardiogram in 4 more weeks just to double check the heart - he said he didn't see anything abnormal, but they want to take one more look when the baby is a bit better developed.

Got a few pictures where it looks a bit less like an alien and more like a baby I'll post later. The girl doing the ultrasound must have given us about 15 pictures...she's so nice...

Baby's echocardiogram today...

« Result #22 on Mar 21, 2007, 3:57pm »

And everything measured out perfectly! I'll try to post some new scans of the baby later (it is much nicer looking now!)

Birth Story of Sorts...
« Result #88 on Jun 28, 2007, 7:46pm »

Hey gang...in crawling the walls I finally asked if there was computer access anywhere in the hospital, and I found one. Violet and Steve are snoozing in the room...

So, anyway, Monday night, like every other night for a while, I had a bunch of contractions. I said to Steve at about 8 p.m. that I thought I'd go upstairs and see if I could figure out how close they were. Well, at about 9:30 I still couldn't see any rhyme or reason, but thought I'd better pack my bag just in case. At 10 till 12, I said to Steve, let's call mom now - I'm not sure if this is it or not, but it will be easier to call her now. I was just going to go to the hospital to let them check me, but Steve insisted that in addition to that he should call my girlfriend who was going to deliver me. She talked to me and said, yes, I think you ought to get over there and I'll meet you there (she said she though "OH SHIT, I hope she gets there in time.) Mom came over, and I could hardly walk during contractions. Anyway, we headed to the hospital...got in and got to the desk. I had a ton of back labor. We got there around 12:20. They checked me in right away, and my friend showed up. Megan checked me and said "Well, I'd have to call this a good 8 cm. We better get you into the room. We got into the room, and they got cracking on the epidural. I started shaking, so I suspect that I had gotten into transition.

Anyway, then I got the epi and felt a lot better. Megan said she was going to go and catch a nap, that it would be an hour or two. She left, and the girls came about 5 minutes later and checked the machine. Sure enough, it didn't appear to be working and she couldn't find the baby. Well, she told her other nurse to check me, and sure enough, the baby was down in the birth canal. They told me to start pushing - I'm thinking WHAT? Anyway, I pushed two or 3 times (this was at about 2:10) and whoosh, out she came. Steve said "It's a GIRL!" And I said "I KNEW IT" Megan handed her to the nurses. And I immediately said "Is she ok Megan?" And she said she is perfect and beautiful, and I'm very sure she has Down Syndrome. I said "Oh Shoot", and then started calling to Steve, who was busy enjoying the baby and told him. He was so confused at first, I think...I don't think he really prepared himself at all that this could be a real possibility.

She nursed surprisingly well...even compared to Lilianne, I think.

I really was shocked, but what can you do other than be full of joy (and hope) when you see her beautiful little self. They got me stitched up (a few more then with Lilianne, but FAR less than Vivianne), and wheeled us to our room.

Well, we had a good first day. As I said the Gene dude from Children's Hospital was great with us, had very very nice things to say about Violet and how she is and what things she was doing...but realistic about what she is going to be all about.

But then the Jaundice started coming in. We expected that, but it has sure been dragging on. We'll be here again tonight (they checked me out but are letting me stay in the room, which is really nice...but then again they lost her blood last night and had to prick her heel again, and then thought they lost it again today. I was so upset...but they finally found it, and have been really great ever since.) We could go home with the blanket, but I think it is better that we stay cause the girls are WAY into her...

Michelle, that story was so very very nice to read...it really touched us. We have the same optimism for Violet. I think the part I'm most concerned about is the two other girls. I don't want Violet and her extra chromosome to prevent us from giving them the things that we want to give them...things like seeing the world are the things I worry about the most "giving up." I am trying really hard to focus on the hear and now and not the future, but things like only having 2 weddings to pay for instead of 3 also make me sad...

Haven't told Vivianne yet. In her eyes, as she said tonight "Violette is perfect." It makes me sad to think that the world doesn't agree with her (and me, and Steve), and that she will at some point in her life hear ignorant, stupid or rude comments about a person we all love. The good thing is I've told her that people always notice the differences in people (like that she is the biggest in her class) and that the differences are good. I'm still trying to decide when and how to tell her.

Children's Hospital in Cincinnati is OUTSTANDING and has a fantastic DS program. The Genetic MD (http://www.cincinnatichildrens.org/svc/find-professional/s/howard-saal.htm) said that they will make everything EASY for us when it comes to managing her health. They will tell us when and what to check for. Everything looks fatastic with her (I swear she is going to be the earliest of my kids to roll over). She seems like she has good muscle tone, she is very cute (looks like a tiny elf, but she's still not all fluffed up yet.) My brother and SIL came to the hospital and said that they did tell their kids that the baby has DS, and that they are around a number of DS kids at school (our school district is OUTSTANDING when it comes to special needs...talk about a blessing - of course I have to resolve some internal issues I have about where to send Lilianne now - keep her with Viv or put her in the public school with Violet) and that wasn't an issue at all for them. The two boys were far more irritated that the girls outnumbered the boys in the family now.

I'm actually feeling like we are going to have a wild ride at our household. I really feel like I've got two kids who are going to be at entirely different ends of the spectrum. Vivianne is so crazy smart in very odd ways that make her difficult, and Violet is going to have issues that will make her difficult in different ways. Lilianne is going to be the social flirt of the world.

I'm very proud of my husband. He's been so great. They took Violet to get blood (from her head!) to test her genetic make up. They wanted to give her sugar water in a pacifier, and he wouldn't let them...he didn't want to screw up our chances breastfeeding!!! I'm determined to give this one breastmilk as long as I can. As I said to Steve, those 4-8 IQ points that BM is said to help boost could be the difference between sorting mail and running the copier!!!!

I'm eager to get back into life at home again. I want to do what my brother and SIL have done, and make sure that her diagnosis is only one element of who she is and what our family is...not the THE element that defines us.

OK, should be off now...I'm certain I've forgotten tons and tons of things that I'll fill in later.

I SO appreciate how supportive you guys have been to me here. All your messages have been so loving and hopeful, and they mean the world to me. I'm certain I'll find some moments that I need to have some self pity here (maybe) and I know you'll probably be the only people who hear it and that you'll know what to say!

Smooch,
M

Violette's DS apt. today...

« Result #75 on Sept 4, 2007, 8:06pm »

Well, since August 2nd she has gone from 7 pounds 9 oz to 10 pounds even today! Little miss scrawny is becoming little miss fatso, thanks 100% to my pumped milk!

We saw a feeding specialist at the hospital today as part of an overall Down syndrome evaluation. They thought she was doing GREAT! The MD who has worked with DS kids in our area for 23 years also said she thought she looked like she was in EXCELLENT shape. I told Dr. Patterson that I've been feeling like the feeling that I had when I was pg with violette is still right - she's in perfect health. Her comment was that she believes mothers have it right 99% of the time, and she's sure I'm right.

She also said that when she started working she didn't believe there would ever be a medical treatment for the cognitive impairments that people with DS have. And she said that she can't believe the advances that have been seen in the last several years. Her feeling now is that in Violette's lifetime - in the next 5-10 years ever - there will be a treatment that will help her cognitive ability. Amazing.

Apparently in the community researching DS, the Doctors are pretty much split between parents of children or brothers and sisters of people with DS and regular old doctors.

BTW, thanks to all of you I really feel like I KNOW so much about DS. The books I ordered have been super - I'm feeling so in the know right now. I also ordered the CD's from the National DS Congress to listen to. They are really interesting - a lot of "self advocates" (adults with DS) give presentations - LONG presentations where they talk about their lives and accomplishments. It is really amazing.

I've also learned that using the word "retarded" out of an appropriate context is perceived by the disabled community akin to using the "N" word - one doesn't do it in polite conversation, one doesn't do it at all. Sharing because pre-Violette I probably violated that out of ignorance, and thought you might want to know and share with your children...this youtube clip is really amazing - long, but an amazing talk about why...

http://www.youtube.com/watch?v=CoqaNG0Ozqc

Fatso update...

« Result #72 on Sept 22, 2007, 9:11pm »

Weighed Miss Violette on the scale at work yesterday. She weighed 11 pounds 13 oz and is just shy of her 3 month mark. That's up from her 2 month mark when she was 9 pounds 6 oz.

At that weight, she is in the 50th% on the people scale, and 95th percentile on the Down syndrome chart!

I'm pumping about 100% for her...ugh. She and my mom and I went to Las Vegas and Denver last week for work. She was wonderful.

Gifts 1 - All the Links from the book

2010-01-07T18:34:00.000-08:00

Gifts - Mothers Reflect on How Children with Down Syndrome Enrich Their Lives is a book I read the week after Violette was born. It was so helpful, and so cathartic to see what other mother's who had a child with Down syndrome thought. Here is a list of all of the links that appear in the book!

If you'd like to review the links from "Gifts 2", check out this thread

INTRODUCTION

Gifts: Two Birth Stories, by Kathryn Lynard Soper
http://giftsds.segullah.org/

THE GIFT OF RESPECT

Belonging, by Rebecca Phong
http://www.alwasychanosaroundhere.blogspot.com/

Different, by Tammy Hodson
http://www.prayingforparker.com/

It's Better than Good, by Janine Steck Huffman
http://www.dadsappreciatingdownsyndrome.org/
http://www.mauzysmusings.blogspot.com/

Who's Winning?, by Sandra Assimotos-McElwee
www.leeworks.net/DDS/speech.html
www.leeworks.net/DDS

THE GIFT OF STRENGTH

THE GIFT OF DELIGHT

A Hopeful Future, by Nancy Iannone
www.thesensoryplayhouse.com/
And you can always find me and Nancy giving out support to new moms with a diagnosis or a positive screen for DS at community.babycenter.com/groups/a14515/down_syndrome_pregnancy

Speech Therapy, by Kelly Schuh
community.babycenter.com/groups/a315/down_syndrome

Loving Emma Jayne, by Emily Zeid
http://www.wonderbabe.blogspot.com/

THE GIFT OF PERSPECTIVE

Nolan: A Little Dream, by Catherine Finn
www.onetruemedia.com/otm_site/view_shared?p=41811d19928d655419aea

THE GIFT OF LOVE

Crecer Con Amor, by Charo Boggian
http://www.crecerconamor.com/

First Words, by Jennifer Graf Groneberg
www.jennifergrafgroneberg.com/

Gifts 2 - All the Links From the Book

2010-01-03T18:37:00.000-08:00

I'm reading Gifts 2 right now and was looking for a handy place to check out all the links in the book - since I was going to be typing them all in anyway I thought I'd save other's the time and put them in a blog post! (please comment if you find any bad links - probably my error and I'll fix them!)

INTRODUCTION

Gifts to Open Kathryn Soper, http://gifts2.segullah.org/

THE GIFT OF ACCEPTANCE

3. Paving Roads Betty Schmidt, http://simplyspecial.homestead.com/

4. This Walker Doesn’t Match My Drapes! Amy Armstrong, http://www.larkinsplace.com/

6. It Is Just Part of Me Margaret Muller, http://www.patriciaebauer.com/

7. Not A Mistake Ellen Armendariz Stumbo, http://www.elliestumbo.blogspot.com/

9. Special Surprise Amy Flege, http://www.theflegefarm.blogspot.com/

THE GIFT OF AWARENESS

17. Mulch Julia Pewitt Kinder

20. Bridget’s Light Lisa Peele, http://www.bridgets-light.blogspot.com/

26. Making the Best of Us Cindy Groom-Harry, http://www.caringriffith.blogspot.com/

28. Pass It On Jennifer Marie Seiger, http://www.karengaffneyfoundation.com/

THE GIFT OF FRIENDSHIP

35. Friendship Ball Denise Sawyer, http://www.dsswichita.org/

40. Part of the Pack Stephanie Meredith, http://www.canisterbooks.com/

42. True Success Nina Fuller, http://www.specialmoms.us/

44. Joaquin and Andres Jennifer Varanini Sanchez, http://www.trisacharm.blogspot.com/

THE GIFT OF COURAGE

48. Rearview Mirror Juergen A. Klingenberg, http://www.teamteagan.com/

50. The Power of One Phone Call Heidi J. Moore, http://www.heidijmoore.com/

54. Journey to Hope Meredith Cornish, http://cornishadoptionjourney.blogspot.com/

55. They Changed the World Kristin Envetchakul, http://billandria.blogspot.com/

58. Going for the Gold Tom Lambke, http://www.spiritcouragersolve.com/ and http://www.ijustam.org/

THE GIFT OF JOY

62. Through Rose-Colored Glasses Caitlin Needham, http://www.littlewonders-heather.blogspot.com/

63. From Hannah to Broadway Lynne Goldklang, http://www.borntoactplayers.com/ and http://www.dsaction.com/

65. Perfect Connie Szarek, http://www.karyces.blogspot.com/

68. The Best Day Jennie Von Tobel, http://www.gigisplayhouse.org/ and http://www.specialgiftstheatre.com/

72. A Child Shall Lead Me Madonna Dries Christensen, http://www.madonnadrieschristensen.com/

73. Unexpected Joy Lisa Huckleberry, http://mymagicalmiracle.blogspot.com/

74. The Greatest Reward Cynthia Cobb, http://www.spscarmel.com/

75. My Favorite Brother, His Name Is Travis Christena Gunther, http://www.vsarts.org/

Businesses Owned By People with Down Syndrome

2009-12-09T15:44:00.000-08:00

Thought it would be fun to put a list together of business owners who have an extra chromosome!

Please comment with any other ones that you know of!

Michael Johnson is a very accomplished artist who has DS. You can order prints, cards, and even original paintings at very reasonable prices from his website. http://users.psln.com/sharing/Michael/mainMichael.html

Dlyan has a store on his web site http://www.oly-wa.us/dkarts/

Simply Adorable Blankets --->http://www.simplyadorableblankets.org/ourblankets.html

Creekside Cookies and more is the other company http://www.creeksidecookiesandmore.org/

Waggies by Maggie
http://www.waggies.org/index.php?option=com_content&view=frontpage&Itemid=1

Group Hug Apparel
http://www.grouphugapparel.com/

Poppin' Joe's Kettle Korn
http://www.poppinjoes.com/about_us

Artist Michael Jurogue Johnson
http://users.psln.com/sharing/Michael/mainMichael.html

Author Kellie Greenwald
http://www.amazon.com/Kellies-Book-Possible-Kellie-Greenwald/dp/1877810428

Author Connor Gifford
http://www.amazon.com/America-According-Connor-Gifford/dp/0981719503/ref=sr_1_1?ie=UTF8&qid=1260327480&sr=1-1-fkmr1

Artist Cinnamon Edgar
http://cinnamonsfloridakeysart.com/

Eric and Megan's card business
http://www.downrightspecial.com/

Artist Dylan Kuehl
http://www.oly-wa.us/dkarts/

Glass Artist - KK
http://kkglassart.com/index.html

Artist Lupita
http://www.lupitacano.com/

Postcards by Tom Eisenger
http://www.inspires2aspire.com/

Sorting, stuffing, childcare and shredding
http://www.ajspecialservices.com/home.aspx

Happy Halloween!

2009-10-31T19:51:00.000-07:00

31 for 21 - 21 Things About Violette That Have Nothing to do with Down Syndrome

2009-10-20T20:14:00.000-07:00

1. She has great hair
2. She likes Elmo
3. She likes Toy Story and thinks the aliens are funny
4. She likes to play with the doll house
5. She loves books
6. She love to draw with pens
7. She loves to draw with markers
8. She loves to draw with crayons
9. She loves to play with her magnadoodle
10. She thinks it is funny to brush her teeth, and reminds me to do it every night
11. If she wants something she yells MMMMIIIIIIIIIINNNNNE - one of her best words
12. She likes to kiss everyone good night before she goes to bed
13. She loves her preschool and knows all of the routines
14. She loves helping out around the house, including washing veggies and putting the clothes in the drier
15. She doesn't like when the doctor checks her ears, or if we get near them
16. She thinks the word "snuffleupagus" is funny
17. She likes Pirates Booty
18. She really likes popsicles
19. She enjoys the Hokey Pokey and any music that involves action
20. She can say doot doot dora and BackPack and LOVES to watch DORA
21. She sleeps with a little soft pink bunny blanket that looks alot like this one

31 for 21 - Lucky

2009-10-17T19:38:00.000-07:00

When I was given 1 in 16 odds that my baby would have Down syndrome, I thought that getting to be the 1 was somehow the unlucky thing to be. See, I've always been the luckiest person I know. I have a great great life.

So, right after the words "She's beautiful and she's perfect and I'm quite certain she has Down syndrome" came out of my good friend (who decided to be an OB instead of the psychiatrist I always thought she would be), I started questioning my luck. It just didn't make sense. Why did my luck suddenly run out?

I spent about 2 weeks questioning where my luck had gone. Then I woke up from my fog, and I looked at Violette. And things were about 85% totally normal in our lives. Then they were about 95% totally normal. So I stopped thinking about where my luck had gone, and just started living. And Violette was so sweet. And then I started to realize, that I was meeting new people, had this wonderful support team I got to work with, and I met other parents of kids with Down syndrome. I saw how great, and yet normal their lives were. And then I saw how great their kids were. And then I met person after person who had a child, or a sibling, etc. Then I listened to every single presentation from the Down syndrome Conference in Kansas City. And I heard so many adults with Down syndrome say "I have the best life ever."

Finally, I was looking at Violette giving me a sweet little grin where her whole face turned inside out, and I realized I was the lucky one to be the 1 in 16.

(here is that face I was talking about, lol)

Anyway, why all this talk about luck? We went to the Children's Theatre Gala for the Cincinnati Children's Theatre. They raffled off 6 prizes. As I was putting my tickets in the baskets, I thought. I'm so darn lucky. I bet I win something.

And we did! We won a big huge Bengals basket at the Children's Theatre gala tonight! 4 Tickets to a home game plus a parking pass, plus a ochocinco t-shirt, a sweatshirt, a signed football by Anthony Munyoz, a magnet for our car, a bumper sticker, a cap and a night at the Omni Netherland Hotel!

I never lost my good fortune. It keeps coming to me. I don't understand why, but I'm very very very thankful for it.

31 for 21 - What Lilianne Thinks

2009-10-15T17:36:00.000-07:00

"I love Violette's little fatness. And Violette is cute. Violette is sweet. And I love her so much. I really like her name when I call her Puddy Tat. I love when she kisses me. I love her hugs. I love when I play with her. And I love when she says "Lili" kind of. Sometimes she helps me, and sometimes I help her." Liliane, Age 4

Oh, and we call Violette "Puddy", "Puddy Tat", or "Puddin' Tater", and have been for a while. Vivianne started calling her "Lil' Puddin' Tater" after something we think she saw on Boomerang when Violette was born, and it stuck!

31 for 21 - The Thomas Center for Down Syndrome

2009-10-14T19:09:00.000-07:00

When I was given 1 in 16 odds that Violette would have Down syndrome, one thing I did was check out our local resources when it came to DS. I went to our Children's Hospital Website, and found this page:

http://www.cincinnatichildrens.org/svc/alpha/d/disabilities/clinical/down-syndrome-center.htm

I called Steve over to the computer, and said "look at that little girl...we could love her easily!" He agreed, she was adorable, and yes, it wouldn't be a problem at all to love her or parent her.

Since Violette was born, we've had so many wonderful experiences with the Thomas Center @ Cincinnati Children's Hospital. Violette goes up there every so often (odd times - I never like to do things on any regular basis, so we might go for a 17 month visit, or a 27 and a half month visit coming up, lol.) They have a team of experts at the Thomas Center focused on one thing - Children and Adults with Down Syndrome.

We have had their Physical Therapist look do an evaluation. We've done Occupational Therapy there. We are currently going to speech therapy there. We have loved EVERYONE on the staff (Miss Jennifer, her speech therapist is AMAZING with Violette.) Katie, David, Fran, Dr. Mattais - all of them are so great, and I feel interested in helping Violette any and every way they can.

Many people on the staff at the Thomas Center have Children with Down syndrome, or siblings with Down syndrome. It is such a joyous, hopeful place for us to go.

They have a new Director in place named Dr. Karen Summer. She is very much into research, and learning more about Down syndrome. We are really excited about what she will bring to the Down syndrome community in terms of knowledge.

They also have a woman who will look over any IEP's to make sure they make sense.

Vi is even a poster child of sorts for the Center - if you look on this banner from the Buddy Walk, the little silly thing (wearing Lilly Pulitzer which is funny if you read this post) second from the right is Vioette!

We're lucky to have the Thomas Center in Cincinnati.

31 for 21 - Tired

2009-10-13T19:30:00.000-07:00

It's Tuesday, and I'm dragging...so it is off to bed early...but I thought I'd put up one of my favorite music videos! Check out the cutie with DS in here!

31 for 21 - DSAGC

2009-10-12T19:49:00.000-07:00

You know the Buddy Walk? Well, all of the proceeds from the walk go to the DSAGC - the Down Syndrome Association of Cincinnati. I was told early on that if you have a child with Down syndrome, one of the best places for him or her to be born is Cincinnati Ohio. That is in large part due to the DSAGC.

We had Martha, the one woman welcome wagon of DSAGC, come to our home 3 days after we brought Violette home from the hospital. She told us so many wonderful things about what to expect from Violette. She gave us materials for us, for our parents, for our children, for our family and for our friends. She guided us. She comforted us. She has a grandson with Down syndrome - so we knew we could trust that what she was saying was true. She told us not to change our plans because of Down syndrome - not one plan, not one dream. That was wonderful advice.

DSAGC runs so many wonderful programs that will span Violette's life - from early age programs, to programs for people with a prenatal diagnosis, to programs for school aged children to programs for adults DSAGC focuses on the needs of people with Down syndrome and their families.

They also run something of an adoption clearing house, maintaining a list of over 200 families waiting to adopt a child with DS.

They also provide supports to teachers, and doctors with current information about what Down syndrome is all about.

I joined the Board of Directors for this group earlier this year, after having been a member of their marketing committee. It has been so rewarding to be a part of DSAGC. They are wonderful.

We always look forward to DSAGC events. They are our new wonderful extended family. And as Martha says "Down syndrome is like a club that you never thought you would ever want to be a part of, but once you are in that club you never EVER want to leave it." That pretty much sums up our experience.

Here is a lovely little video that DSAGC created. I know several of the families in the video!

The Journey Ahead from Christian Appleby on Vimeo.

31 for 21 - So How "Severe" is it?

2009-10-11T15:18:00.000-07:00

If you want to know a question that always puzzles a mama with a child with Down syndrome, one that would certainly be in the top 10 is "How severe is it?" It is kind of like asking a bald man how severe his baldness is? Is it less severe when he's starting to lose the hair? Is it only severe when he's bald? How do you measure that sort of thing? If you have high expectations, and she does well, does that mean it isn't severe? What if you had low expectations, and she's better than that - severe or not severe? Am I judging based on how happy she is? How well she does at playing games? Academically? IQ? How well she does physically climbing and such? Her health issues? How she is compared to the other girls? It seems an impossible question to answer.

Every part of her 100% has Down syndrome - not a little, not a touch of it (that's for you, mom, lol), not "I don't see it in her it must be mild." She is a person who has Down syndrome. On the one hand it is as 'severe' as it gets...LOL. On the other hand, there is nothing severe about Violette...she's just silly as you can see in this video from earlier today! We, like most parents of kids with DS, feel like she's doing great!

31 for 21 - Buddy Walk 2009

2009-10-10T19:09:00.000-07:00

Our Buddy Walk was today!

We had a wonderful time. There was a group of about 20 of us walking. Thanks to my friend Tracey (in addition to all of our natural beauty), the team looked great! Here is a picture of Team Violette:

And here is one of Violette and Lilianne:

So far we have raised over $1,800 for the Down Syndrome Association of Greater Cincinnati, thanks to our friends and family. We are so lucky. We had so much fun. And we love Violette so much!

Thank you!

31 for 21 - Language Matters!

2009-10-08T18:58:00.000-07:00

I thought it might be helpful to give you some information about what language most of us who are parents of children with Down syndrome prefer to hear when referring to our kids. If you didn't know the way we prefer it until now, please don't feel bad if you've ever written or said something that wasn't the way it is written below - many of us did the same thing until someone told us!

Below are tips for the proper use of language for ‘Down syndrome’. The National Down Syndrome Society and the National Down Syndrome Congress encourages the language below:

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.
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.” This seems like a minor distinction, but to me it is like the difference between someone telling you “you look pretty in that dress” vs. “that dress looks pretty on you.” One compliments the dress, the other is a compliment to you.
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.
Our kids are "normal" (whatever that is, lol,) they just have Down syndrome. So we prefer not refering to kids without DS as normal (we haven't seen any that are yet, lol). We don't like that word much because it implies our children are abnormal.
It is clinically acceptable to say “mental retardation,” but you may want to use the more socially acceptable “cognitive disability,” "developmental delay" or “cognitive impairment.”

Hope that helps!

31 for 21 - What Vivianne Thinks

2009-10-07T17:56:00.000-07:00

Today, a few words from my almost 10 year old daughter Vivianne about her cousin, and sister. She entered this in an essay contest about living saints:

My name is Vivianne and my living saint my cousin, Joseph.

Joe is in the 4th Grade. He was born with a Mitochondrial Miopothy. That’s when you have trouble with strength in your muscles.

Here are a few reasons why he is my saint. First, when he was born the doctors said that they weren’t sure he would be able to talk or walk but guess what! So far he can talk and he can walk and he has now he has successfully locked my grandfather off of his computer. He is amazing using a computer – better than I am!

And in July of 2007 I had a sister and she has Down syndrome and I’m so used to having someone who’s a little different, I sometimes forget she has Down syndrome!

And I feel as though Joe showed me that just because you are different on the outside you are the same on the inside
That is why Joseph is my saint.

What Can a Person with Down syndrome do?

2009-10-06T17:33:00.000-07:00

People with Down syndrome can do anything.

They are on Facebook, and maintain their own Accounts (I have 16 FB friends with DS)
www.facebook.com/pages/Blair-Williamson/107502043650

They can swim – one even swam the English Channel
www.karengaffneyfoundation.com/articles/channelawaits.shtml

Some like to sky dive
http://www.dailyherald.com/story/?id=305224

They do Yoga
http://sarahely8989.blogspot.com/2009/10/yogareach.html

Some are accomplished musicians
http://www.sujeet.com/

Some get married
http://andycamphotovideo.com/scarritt-bennett/josh-bernadettes-wedding-at-vanderbilts-scarritt-bennett-chapel-in-nashville/

Some are artists
http://www.usatoday.com/news/world/2008-02-09-artists_N.htm

Some are rappers
http://www.laz-d.com/

Some are hunters
http://www.deer-forums.com/discus/messages/2109/16257.html?1156184259

Some are history buffs, and authors
http://www.capecodonline.com/apps/pbcs.dll/article?AID=/20080706/LIFE/807060322/-1/news

Some even have tattoos
http://archives.chicagotribune.com/2008/jun/15/nation/chi-father-son_bdjun15

Some run their own businesses
http://media-dis-n-dat.blogspot.com/2009/04/man-with-autism-down-syndrome-runs.html

They can cut hair
http://www.ldnews.com/news/ci_14115863

They can be in a rock band
http://www.flametheband.com/

They can be in the National Honors Society
http://www.wellsphere.com/down-syndrome-article/student-with-down-syndrome-inducted-into-national-honor-society/880890

They can teach school
http://notableaccomplishments.blogspot.com/

They can drive a car
http://www.youtube.com/watch?v=tAoI0w1Pe_Q&feature=player_embedded#t=11

Work at a Hospital
http://www.dhmc.org/apps/vidPlayback/vidPlaybackPopUp.cfm?ID=11192&nativeCode=1+++

Pretty cool, huh? Anyone else have someone wonderful to share?

31 for 21 - Normal Life

2009-10-05T20:03:00.001-07:00

Tonight I thought I'd share with you how we incorporate therapy and medical treatments into our day with Violette. You'll see how stressful it is (not!)

So tonight, Steve went to pick his mom up at the airport.

The girls wanted to go to Sonic Burger for dinner, and they decided to watch Toy Story in the car while we ate. I decided it would be a good time for some OT (Which is occupational therapy for those of you not parenting a child with DS.) Violette sat in her seat, drank her milk, put it in the cup holder on her car seat when she was done with it, ate a grilled cheese and french fries. Then she gobbled down a banana. I read the paper, and a magazine. That is what I call OT.

Next up was the medical portion of the evening. We went home. I had picked up some Nordic Naturals DHA Supplement for Violette to take today (DHA is basically fish oil, and this particular brand has a pretty good reputation with the other moms of kiddos w/DS) so I gave 1/2 a teaspoon of that to Violette. She took it great. Then she got her reflux medicine - she gets a 1/2 a teaspoon. Nasty tasting stuff that she loves. Again, she took it great.

We then moved into the PT portion of the evening (PT = Physical Therapy). She and Lilianne watched the Backyardigans. I ran upstairs and checked the computer. During that time, Lilianne and Violette danced in circles, and Lilianne pinned Violette down on the floor of the family room. Vivianne yelled at her to stop, and Violette fought her way out of the hold. It was a very active PT session.

I came back down stairs. Got her bottle together (a little more Dr. Mom - I carefully slop about a half a cap of Miralax into the bottle to keep her "regular".) Grabbed her to take her to bed - she kissed Lilianne goodnight, and came upstairs and kissed Vivianne goodnight.

Then more OT. We went in the bathroom and she brushed her teeth. And then I helped her brush her teeth. And then she spit out what was in her mouth, and I gave her a little drink of water.

Next up? Speech Therapy. We went in and changed her into her jammies. Then she signed "Book" to me. We went over to the rocking chair, and I read her two books. She LOVES looking at and listening to books. She's pretty cute in that she signs a lot of what she sees, so she's really following right along with it.

I then put her in her bed, turned on her music (Sounds Like Fun from Discovery Toys is what she listens to every night.) And then I left...

Then I heard her crying, which usually means one thing. And it did. The Miralax that keeps her regular, kept her regular yet again. I can set my clock by her poops, lol! While changing her I asked her all her body parts. She knows head, hair, eyebrow, eye, teeth, ear, nose, lips, tongue, arm, elbow, fingers, fingernail, heart, belly, tummy, belly button, bootie, legs, toes, toenail and knees. We are working on ankle.

So I changed her, and then she wanted to rock with me. She loves getting silly at this time of day, and seems to do the most of her talking then.

So we take advantage of this very active and alert time of day for Violette (when she should be sleeping, lol) with our most intense speech therapy of the evening. I usually will prompt her to say all the words that I know she can say. Things she can say include boat, more, mom, eyes, MINE!!!!, done, Dora and quite a few more. I'll ask her to say something, and she'll repeat it, or show me the sign. I'll try to sneak different words in to see if she comes up with the approximation. Now the whole time we are doing this, we are rocking back and forth, and usually she is standing on my legs, doing back bends, patting my hair, looking at my teeth, and just being silly and giggling.

Tonight I put a new twist on the game by asking her a bunch of words I knew she knew. Then I said, OH, Violette, I know an EASY word for you to say. She looks at me with big, expectant eyes. Then I said "Can you say Snuffaluffagus?" Her eyes got wider, and she shook her head NO!. I said "Come on, I bet you can say it! Say Snuffaluffagus?" To which she responded with the most hilarious belly laugh you can imagine. We did that about 10 times, with me feeding words she knows to her, followed by "Hey Violette, I know an easy one. Say Snuffaluffagus!" Each time she shook her head NO!!! Followed by both of us laughing harder and harder and harder each time I did it.

Finally she went to bed and was down for the night!

Phew. That therapy stuff really wears me out!

31 for 21 - Doctor or Dinosaur?

2009-10-04T06:15:00.000-07:00

If you were a pregnant mother, and had been told your child screened positive for Down syndrome, and your fancy doctor who was going to be doing your ultrasound showed you a slide with this information on his web site, what would you think?

What are the problems with a child or adult with Down syndrome? Unfortunately, there are many. These include

mental retardation,

growth retardation,

early onset of Alzheimer’s disease,

congenital heart defects,

hearing loss,

eye disorders,

epilepsy,

gastrointestinal malformations,

hypothyroidism,

leukemia,

spinal cord compression,

increased risk for infection,

and infertility.

From www.fetal.com
You can see the slide if you click on the link in the center of the page that says "1rst trimester screening for Down Syndrome" and then look at the 6th slide

I wish all of us could have a list like this of the problems with being human. We all are predisposed to possible "issues." Some of us will get cancer at a higher rate, some have heart issues. Some of us are drug addicts, or alcohol addicts. Some have flat feet. If you totalled up everything that you might have, or your husband might have, or your typical children might have, and saw a list, you would live in fear.

In our case, so far, Violette has been quite healthy. She has a congenital heart defect, but it is minor. Thing about people with Down syndrome is that while "congenital heart defect" sounds frightening, where medicine is today, the type of heart defects typical of people with DS are usually treatable, and kids with DS do very very well after the surgery. Violette hasn't needed heart surgery, and if she does, it will be a minor procedure (believe it or not) where they will run something up her leg, and she'll be done.

Violette may have a "gastrointesinal malformation." She takes reflux medication every morning and every afternoon - a half a teaspoon full of zantac. No biggie if you stay on top of it. If you don't treat it, it can lead to serious issues. But we treat it, and she should be in good shape. (Her maternal grandmother has been taking meds like Zantac for the last 20 years for her "gastorintesinal malformation" and we all think she's more than OK.)

Other than that, right now she has bad eyes - like her mother and her father (and her grandparents and her cousins and her uncles.) And she'll be getting glasses.

This doctor irks me. I can't lie. If this slide was followed up with something about what life can be like for people with Down syndrome, a point to the quality of life of the family or a reference to learning more about DS from an organization that specializes in it (there are 5 clinics for DS in California, and several excellent parent support groups) I'd have more respect for what this doctor is trying to do. Why, for instance, didn't he comment on the fact that people with DS are less likly to get solid tumor cancers?

Doctors giving only one part of the story about Down syndrome should soon become the dinosaurs that they are. There is a new law, Public Law No: 110-374 is called the Prenatally and Postnatally Diagnosed Conditions Awareness Act.

It is the purpose of this Act to--

(1) increase patient referrals to providers of key support services for women who have received a positive diagnosis for Down syndrome, or other prenatally or postnatally diagnosed conditions, as well as to provide up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes;

(2) strengthen existing networks of support through the Centers for Disease Control and Prevention, the Health Resources and Services Administration, and other patient and provider outreach programs; and

(3) ensure that patients receive up-to-date, evidence-based information about the accuracy of the test.

As for me, I don't spend a whole lot of time worried about Violette's health. Monitor it closely, yes, but worry about it, not so much. I feel she is here, with us for a reason. I want to enjoy living with her silly little self and not waste time worried about what might be. The list above is merely what is possible - not a definitive list of what is going to happen. It would have been nice if the doctor had pointed that out.

31 for 21 - Cheer

2009-10-03T06:55:00.000-07:00

Do you have a little Down syndrome NFL Cheerleader? If so, send my friend RK a copy of a picture of her! We'd like to get every team, and as we already have the tricky Ben-gal, we think we might have a chance at it!

Visit RK here: http://justrk.blogspot.com/2009/10/31-for-21-cheer.html

And you can also check out her adorable daughter's blog here: http://braskabear.blogspot.com/

Here's a sneak preview:

!

WHO DEY!!!

31 for 21

2009-10-01T17:10:00.000-07:00

Happy Down syndrome awareness month! This month, a lot of the mommy bloggers of kids with Down syndrome are doing "31 for 21"! It’s a challenge to post 31 blog posts the month of October to raise awareness for DS. Knowing my short attention span, we'll see how I do!

Anyway, if you have questions about Violette and/or Down syndrome, now is a great time to ask!

The Down Syndrome Homecoming Kings and Queens

2009-10-01T17:02:00.000-07:00

In the last couple of days, I've seen 4 stories of people with Down syndrome being named king or queen of their schools (and if this year is like last year when there were at least 9, I bet more are coming - I'll update here as I see them):

http://www.volunteertv.com/home/headlines/59806182.html

http://www.kcci.com/education/21110021/detail.html

http://www.wbir.com/life/programming/local/liveatfive/story.aspx?storyid=99753&provider=gnews

http://www.citizen-times.com/apps/pbcs.dll/article?AID=/20090924/COLUMNISTS16/909240315/1044/COLUMNISTS

http://www2.wsls.com/sls/news/local/article/special_night_for_hidden_valleys_homecoming_queen/52197/

I've thought a lot of this. I wonder if it is possible that mainstreaming has something to do with this? 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 kind of like that!

2009-08-26T18:15:00.001-07:00

Gardner Publications named Family Business of the Decade for Greater Cincinnati http://bit.ly/22nhz7. Wow! What an honor!

NDSC Compendium Web Links - 2009

2009-08-22T20:59:00.000-07:00

NDSC Convention Compendium Web Links

Since Violette was born, I've followed what has gone on at the NDSC Convention. It is the Annual Gathering of the DS Community. The first year she was born, the event was in Kansas City. I bought the CD's and listened to every single presentation in my car. With over 60 Workshops, it makes for a lot of information on Down syndrome! My girls kept asking me when I'd EVER be finished with the BORING CD's!

I went to the Boston Conference last year. It was great, and I learned a lot and more importantly got to know a bunch of great people in the DS community.

This year it was in Sacramento. I didn't go, but I did get the Compendium of all of the papers. I have the CD's on order.

I always wished that there were a spot online where I could go and click on all of the links for all of the presentations. This year, I decided that I really wanted them all in once place, so I went ahead and typed them all up. They are listed below. Some of the links I'm certain don't work - please leave me a note saying which ones are wrong and I'll check to see if they are bad links and try to correct them, or if it was my own error (which is more likely!)

Math Doesn’t Have to be a Drag

www.dsfoc.org -The Learning Program

http://www.see-and-learn.org/ - DownsED International’s See and Learn Program

http://www.downsed.org/discussion-lists/ - Join one of the DownsEd International’s Discussion Lists

Join One of the Learning Program Email Lists

thelearningprogram@yahoogroups.com – for anyone using LP materials

TLP_teacher2teacher@yahoogroups.com – for educators

http://www.downsed-usa.org/

http://www.learningpage.com/ - Math Worksheets

Behavior and Communication: Promoting Positive Behavior Change

http://www.apbs.org/ – The Association for Positive Behavior Support

http://www.pbis.org/ – Center on Positive Behavioral Interventions and support

http://rrtcpbs.fmhi.usf.edu/ - Rehabilitation Research & Training Center on Positive Behavior Support

http://flpbs.fmhi.usf.edu/ - Florida’s Positive Behavior Support Project

http://education.ucsb.edu/autism/JPBI.htm - The Journal of Positive Behavior Interventions

http://www.beachcenter.org/ – The Beach Center on Disability

http://www.behavioradvisor.com/ – Dr. Mac’s Amazing Behavior Management Advice Site

http://challengingbehavior.fmhi.usf.edu/ - Center for Evidence-Based Practice: Young Children With Challenging Behavior

http://www.iidc.indiana.edu/irca/ - Access Autism

Improving Feeding Skills and Speech Clarity: Using Oral Motor Therapy

http://www.talktools.net/

A Land of Opportunity: Increasing Diversity within Your Organization

http://www.ndsccenter.org/

http://www.tash.org/

http://www.ndss.org/

http://www.downsyndromeindiana.org/

Resources for African American Families
http://www.prince-evan.net/ – National Minority Families Down Syndrome Network

http://smith-smiths.blogspot.com/

http://zyonair.com/blog1/

African American Parents of Children with Down Syndrome (Facebook Group)

Resources for Latino and Spanish Speaking Families

http://www.downsyndromeinfo.org/resources

http://www.nads.org/pages_new/new_parents/support_spanish.html

http://www.down21.org/

Resources for Asian American Families

http://health.groups.yahoo.com/group/asianparentsgroup/

http://www.hawaiidownsyndrome.com/

http://www.bradnet.org.uk/

http://www.p2ppower.org/

Special Needs Trusts as an Advocacy Tool
http://help.senate.gov/Hearings/2005_10_20/Lawhead.pdf

http://www.achievingindependence.com/

http://caremanager.org/ - Association of Professional Geriatric Care Managers

http://www.guardianship.org/ - National Guardianship Association

Growing Up, Growing Older, Mental and Physical Wellness in Adults with DS

www.advocatehealth.com/adultdown

Planning for Adult Communication Needs and Skills During the School Years

http://www.thegraycenter.org/

http://www.dimagine.com/index.html

http://www.modelmekids.com/

http://www.sandbox-learning.com/

Volunteering and Service: Meaningful Opportunities to Foster Community, Independence and Develop Skills

http://www.nationalservice.gov/

http://www.serviceandinclusion.org/

DS Cognition Research: “Unprecedented” Progress and Promising New Therapeutic Strategies and Opportunities

http://www.dsrtf.org/

http://www.dsrtf.org/news-ds.htm

http://www.dsrtf.org/news-dsrtf.htm

How Current Congressional Activity and Federal Legislation Affect You

http://www.passthecommunitychoiceact.org/

http://www.passtheclassact.org/

A Brave New World? Prenatal Testing and DS

http://www.brightertomorrows.org/

http://www.downsyndromebrochure.com/

http://www.mhdsa.org/videos/VirtualVisitsFamilyNewParents.htm

http://www.dsagc.com/

http://www.dsact.com/index-2.html

http://www.dsagc.com/programs_adoption.asp

http://www.reecesrainbow.org/

http://www.dsaoc.org/programs/tunnelEnglish.pdf

http://www.kcdsg.org/files/content/NewBeginningsMagazine.pdf

http://canisterco.com/books/index.html

http://www.dsact.com/images/docs/07LtrtoExpectantParents.pdf

http://www.bandofangels.com/

http://giftsds.segullah.org/

http://www.lopsidepress.com/pamphlet

http://anniegroves.wordpress.com/2008/01/12/the-phone-call-the-day-and-the-doctors-office/

http://catholicnewsagency.com/new.php?n-13408

http://www.timesonline.co.uk/tol/comment/faith/article2343739.ece

http://www.smh.com.au/news/health/increase-in-down-syndrome/2008/05/15/1210764961237.html

http://www.cnsnews.com/Public/content/article.aspx?RsrdD=33833

http://www.thinkcollege.net/

http://www.dsagc.com/programs_adoption.asp

http://www.webmd.com/cancer/news/20080102/down-syndrome-may-curb-cancer

http://www.sciencedaily.com/releases/2008/02/080204143158.htm

Open Your Gifts: Sharing the Riches of Parenting A Child with DS

http://www.ltbds.org/ – Lives Touched by Down syndrome

http://acog.org/from_home/publications/press_releases/nr01-02-07-1.cfm

http://www.newscientist.com/article/dn11095-noninvasive-downs-syndrome-test-shows-promise.html

http://www.nytimes.com/2007/05/09/us/09down.html?_r=2&pagewanted-1&oref=slogin

http://www.news.harvard.edu.gazette/2005/02.02/27-down.html

http://giftsds.segullah.org/gifts-outreach-program/

Employment for All: What you Need to Know about Supported and Customized Employment

http://help.senate.gov/Hearings/2005_10_20lawhead.pdf

http://www.emplink.org/

http://www.cdhs.state.co.us/ddd/PDFs/AdHocCommitteeonEmpAndCommunityFinalReportEmployment.pdf

Universal Design for Learning: Meaningful Access to the Curriculum for All Students

http://www.cast.org/

http://www.udl4allstudents.com/

http://udleditions.cast.org/

http://osepideasthatwork.org/udl/index.asp

http://www.tash.org/dev/tashcms/ewebeditpro5/upload/UDL_NCLD_Parent_s_Guide.pdf

http://cast.org/publications/UDLguidelines/version1.html

Why Not College? Start Planning Now

http://ndss.org/index.php?option=com_content&view=article&id=126%3Atransition-apostsecondary-initiative&catid=48%3Alegislative-and-policy-agenda&itemid=143&limitstart=1

http://www.thinkcollege.net/

http://uclaextension.edu/pathway

http://uclaextension-pathway.blogspot.com/

Comprehensive Special Needs Planning: Life Resources, Financial and Legal

http://www.coloradofinancialpartners.com/

Issues and Concerns during Pubescence

http://www.marshmedia.com/ – Guides to Growing up

http://www.stanfield.com/ – Changes in You, etc.

http://www.kingcounty.gov/healthservices/health/person/famplan/educators/FLASH.aspx (be sure to scroll down to lesson plans for special education)

http://www.woodbinehouse.com/

http://www.futurehorizons-autism.com/

http://www.dsansw.org.au/index.php?pg261

http://www.specialneeds.com/ – Changes in You

http://www.cdss.ca/en/store/sexuality_and_relationships.htm

http://www.americangirlsstore.com/ – The Care and Keeping of You

Creating a Collaborative Environment>

http://www.blueribbonschools.com/

5 Secrets of Effective Parents

http://www.becomeabetterfather.com/

Supporting Higher Math: Songs, Stories, Games and More

http://shop.downsed.com/epages/DownsEd.sf/en_GB/?ObjectPath=/Shops/DownsEd/Products/12101-001801

http://www.epsbooks.com/ – Attack Math

http://avcsbooks.com/ – Attack Math, Developing Number Concepts

http://www.mathusee.com/worksheet/worksheet.html

http://www.rocknlearn.com/html/telling_time.htm

Personal Safety Skills, Self-Determination and Abuse Awareness>

http://www.safelifeproject.org/

Visual Tools & Strategies

http://asksaal.org/

http://dimagine.com/

http://disabilityisnatural.com/

http://disabilitysolutions.org/

http://HSRI.ORG/LEADERS

http://inclusion.com/

http://inclusiveschools.org/

http://kidstogether.org/

http://normemma.com/

http://peakparent.org/

http://www.usevisualstrategies.com/

Strategies for Teaching and Supporting Healthy Sexuality

>
http://www.parentingpress.com/ – Loving Touches

http://www.teach-a-bodies.com/

http://www.annickpress.com/ – The Bare Naked Book

http://www.newmooncatalog.com/ – The Period Book

www.roeher.ca/english/about/about/htm - Out of Harm’s Way

http://www.prometheusbooks.com/index.php?main_page=index&cPath=96_127 Did the Sun Shine Before You were Born?

http://www.rcpsych.ac.uk/publications/bbw - Books Beyond Words

http://www.dsansw.org.au/index.php?pg=261- Talk to Me

http://www.jkp.com/catalogue/index.php/cat/autism

http://www.pbrookes.com/

www.roeher.ca/english/about/about/htm

http://www.dsansw.org.au/index.php?pg261

http://www
.diverse-city.com/ – Just Say Know

http://www.brokespublishing.com/store/books/walkerhirsch-67144/index.htm

http://www.jkp.com/catalogue/index.php/cat/autism

http://disabilitytraining.com/sexed.html

http://poetv.com/video.php?vid=10537

http://www.pfg.unc.edu/~ncodh/pdfs/providersguide.pdf

http://egeneralmedical.com/familyhealth.html

http://www.fpg.unc.edu/~ncodh/pdfs/wbhealthy.pfd

http://www.yai.org/ – Relationship Series