Welcome to Down syndrome Blogs

Welcome to Down syndrome Blogs

This is a site for blogs with a positive connection to Down syndrome. They are largely the stories of families within the Down syndrome community. All are welcome.
The blogs are categorized by sub-category in the hope of making it easier for you - the reader - to find a story, a voice or information that speaks to you. Blog links on the main page here are LIVE; blog links on the category pages are STATIC.

If you would like your blog to be added, please email me your blog URL along with the pages your blog fits best under at: meriahnichols (at) gmail.com. You can easily find me on my own blog, With a Little Moxie.

Thursday, May 9, 2013

The Spotlight's On: Alison Piepmeier


Getting to Know You:


Name:  Alison Piepmeier

Blog Name and URL:  “Every little thing” (www.alisonpiepmeier.blogspot.com).  I also used to have a blog called “Baxter Sez” (www.piepmeier.blogspot.com).

Blogger or Wordpress?  Blogger

Favorite widget or plugin?  Oh, I don’t think I’m cool enough to have an answer to that question.

What’s one thing that people don’t know about you?  I feel like I’ll talk about anything on my blog!  But people probably don’t know that cold cereal is my very favorite food of all.  Mmm, I wish I were eating some right now.

While we are at it, what’s your theme song?  “Groove Is In the Heart,” by De La Soul. 

Dish you would bring to our community picnic:  Chocolate chip cookies.  Or maybe fudge pie—I don’t love fudge pie, but everybody else does.


On Blogging:

What got you blogging and what keeps you going?  I started blogging because my then-husband and I lived in different states, and we’d moved away from the state where our families live (Tennessee).  The blog was a place to share what Charleston was like, and then for us to keep in touch with each other while Walter was finishing his last year of graduate school.  What keeps me going is the fact that I love blogging.  It’s a place where I can get my ideas out in an informal, non-academic way.  And I can get feedback and create a community.


One post (that you wrote) that makes you laugh? “Bitchmother” was a pretty funny one (and it includes an illegally posted picture from the fantastic zine, The East Village Inky, by Ayun Halliday):  http://alisonpiepmeier.blogspot.com/2013/02/bitchmother.html

One post you are really proud of, for whatever reason?  This is an old post, from 2006 on “Baxter Sez,” called “Hairy-Legged Feminist” (http://piepmeier.blogspot.com/2006/05/hairy-legged-feminist.html).  The byline is Biffle, but I wrote it.  It has nothing to do with Down syndrome.  People love it.  I’m proud of it as much as anything for the impact it’s had.  We don’t talk nearly enough in mainstream American culture about the possibility of letting your body hair grow.


How have you seen your blog/blogging style change and how would you like to see it develop?  My blog has become a little more focused on Down syndrome and disability studies, as well as reproductive justice—the topics I’m researching right now.  I don’t want that to become the focus of my blogging, though.  I appreciate the blog because it’s a site where I can articulate and explore anything I want to.  I gave the new blog the name “Every little thing” because I want it to be a space for whatever I’m interested in.


Two blogs you love to read and why?  I love “a moon worn as if it had been a shell” (http://elizabethaquino.blogspot.com), a blog by Elizabeth Aquino who is a fantastic writer.  Her daughter has epilepsy, and that’s something she blogs about quite a bit, but she also blogs about politics, food, parenting, poetry—I always enjoy going over there.  Another I really enjoy is “Viva la Feminista” (http://www.vivalafeminista.com).  Veronica Arreola is a scholar, activist, and mom, and she’s becoming a bigger and bigger name online!


Where else can we find you online?

Oh, my—here’s a list of options:

·        “Choosing to Have a Child with Down Syndrome” on the NYTimes Motherlode blog (http://parenting.blogs.nytimes.com/2012/03/02/choosing-to-have-a-child-with-down-syndrome/)
·        “Outlawing Abortion Won’t Help Children with Down Syndrome” (http://parenting.blogs.nytimes.com/2013/04/01/outlawing-abortion-wont-help-children-with-down-syndrome/)
·        “Girl w/Pen” (http://thesocietypages.org/girlwpen/)


Wednesday, April 24, 2013

The Spotlight's On: Stephanie Meredith, Nancy Ionnone and Missy Skavlem of Down syndrome Pregnancy

Getting to Know You:


Name: Stephanie Meredith, Nancy Iannone, and Missy Kline Skavlem


Blog Name and URL: Down Syndrome Pregnancy, downsyndromepregnancy.org


Blogger or Wordpress? Wordpress


Favorite widget or plugin? Google Analytics


What’s one thing that people don’t know about you? Managed the translation of “Babies with Down Syndrome” into Russian and travelled to Russia in 2011 as a US Speaker on Down syndrome. Best experience ever! (https://www.facebook.com/pages/To-Russia-With-Love/193126564089443?fref=ts)
 

While we are at it, what’s your theme song? Mumford and Sons “After the Storm” –
Nancy and Stephanie’s favorite band


Dish you would bring to our community picnic: Raspberry Trifle

On Blogging:


What got you blogging and what keeps you going? 

I have worked as a technical writer since 1997 and worked as the Assistant Editor for Patricia Bauer’s Disability New Blog (www.patriciaebauer.com) from May 2008-December 2009. Nancy and Missy had been providing live support at BabyCenter for years and wanted a place where information
could be consolidated in a meaningful way. 


Then, Nancy, Missy, and I launched Down Syndrome Pregnancy, along with our book “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome,” in 2010. Our point was to provide information and support to expectant moms in a “safe forum.” One of my best moments was a couple of weeks ago when I met a mom from Kansas City who told us our books, blog, and discussion board
were her lifeline during her pregnancy. It’s amazing to know that we’re helping people
across the country.

One post (that you wrote) that makes you laugh? 

Ours don’t tend to be funny since it’s not a platform for our personal expression. It’s more about providing information and sharing perspectives. But I loved the comments generated by this post: http://downsyndromepregnancy.org/diagnosis-day-parents-what-would-you-say-to-your-past-self/
I love reading the comments generated by the posts and the different perspectives shared
from other moms among each other. Please add yours!

One post you are really proud of, for whatever reason? 

I’m really proud of the medical outreach program that is now used by more than 65 local Down syndrome organizations nationwide: http://downsyndromepregnancy.org/down-syndrome-prenatal-outreach-program/
 

I also think Nancy’s identification of research gaps for Down syndrome pregnancies is
incredibly important and will hopefully motivate more research into best practices for
pregnancies as the new non-invasive prenatal testing becomes more prevalent: http://downsyndromepregnancy.org/research-gaps-down-syndrome-pregnancy/

How have you seen your blog/blogging style change and how would you like to see it develop? 

I want the blog to become a more topical column within a website and to wrap the other informational parts of our blog into a website format with more photos and more modern design. We’re hoping to get this done in the very near future.

Two blogs you love to read and why?
http://www.mystubbornmiss.com by Megan Landmeier (Love reading about Ellie and
Megan, who was one of “our moms.”)
http://www.downsyndromeprenataltesting.com/
http://www.patheos.com/blogs/thinplaces/
http://alisonpiepmeier.blogspot.com/
http://thednaexchange.com/tag/genetic-counseling/
www.brianskotko.com

Where else can we find you online?
www.lettercase.org as the author of “Understanding a Ds Diagnosis”
www.downsyndromediagnosis.org as the Medical Outreach Director of the University of
Kentucky’s Human Development Institute
Gifts and Gifts 2: http://www.amazon.com/Gifts-People-Syndrome-Enrich-World/dp/1890627968
www.patriciaebauer.com
http://yomammamamma.blogspot.com/ (Missy Skavlem)
http://community.babycenter.com/groups/a14515/down_syndrome_pregnancy?
Lots of software blogs, user manuals, and websites you’ll probably never want to read.


Down Syndrome Pregnancy is now part of the National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky’s Human Development Institute. 

The National Center includes Lettercase, Down Syndrome Pregnancy, and Brighter Tomorrows. I work as the Lettercase Program/Medical Outreach Director at the university, and Missy and Nancy still volunteer for the blog and the BabyCenter board. All products are free digitally, and all proceeds for print materials are used to support the programs.
Stephanie in High School!


Wednesday, April 17, 2013

The Spotlight's On: Tara McCallan of The Happy Soul Project

Getting to Know You: 


Name:  Tara McCallan or t as everyone calls me...
Blog Name and URL: Happy Soul Project- http://www.happysoulproject.com/
Blogger or Wordpress?  Blogger but constantly wonder if Wordpress or another platform is better...
Favorite widget or plugin? Hmmm I don’t have too many on my blog- but love seeing what blogs make my 10 most popular post...Interesting to see...
Dish you would bring to our community picnic: Since I don’t cook, I’d either be getting my hubs to make his delish potato salad or I’d be stopping at a bakery for dessert...

On Blogging: 


What got you blogging and what keeps you going?  Lovely question & I address this exact one at http://www.happysoulproject.com/2012/02/day-one-why-pin-me-blog.html - But to summarize;
  1. My love of writing
  2. I’m an open book so might as well write about it
  3. My world changed when I had my hooligans- The blog documents my 20 month old son Noal’s life & my start in Mummy~Hood & also shares our journey with Down syndrome when my daughter Reid was born just a few months ago.
  4. Pinterest & the accountability it forced on me...I didn’t want to portray that I was actually the person who did things I “pinned” without taking the time/effort to at least try, create, make or do them...
  5. Pass something on in life...

One post that makes you laugh?  Hmmm probably my entire page dedicated to Operation Ellen- My hubs challenged me to try & get Ellen’s attention when I first started the blog...He truly thinks there is absolutely NO chance & has even stated that he would get a much despised tattoo if I do...Taking the challenge on I have made a fool of myself with videos, photos & annoying blog post to try & get her attention...No such luck yet- But I have hope..

One post you are really proud of, for whatever reason?  
It took awhile to share exactly what I was feeling when we first found out Reid had Down syndrome- this post is my heart, raw to the core... http://www.happysoulproject.com/2012/12/life-is-beautiful-because-reid-layne-is.html

How have you seen your blog/blogging style change and how would you like to see it develop?
The blog has changed completely...What started out as “Pin Me” t...has now become Happy Soul Project- You can read more about how/why the change was needed on the blog & in my life...
As for the blog’s development- I would absolutely love to work with a web/graphic designer to help create what I dream for the blog to look like but lack technical skills to actually do...

Where else can we find you online?


Tuesday, April 9, 2013

The Spotlight's On: Little Bird's Dad

 Name: Little Bird's Dad (I blog anonymously, for a variety of reasons.  On the T21 alliance FB Group, I use my middle name, Francis.

Blog Name and URL:  Little Bird's Dad:  www.littlebirdsdad.com

Blogger or Wordpress?  Wordpress.com

Favorite widget or plugin?  Wordpress.com doesn't let us use plugins and I'm still learning how to use widgets. If I could use plugins, my favorite would be Google Analytics plug-ins.  The information on Google Analytics enabled me to transform the reach and influence of my work blog, a blog for the specific type of law that I do in my day job. 

Dish you would bring to our community picnic:  Homemade spaghetti and meatballs, using the recipe that our family has used every Sunday since time began, I think. (We call it macaroni and sauce, though).

What got you blogging and what keeps you going?  I started blogging to process some of what I was experiencing as a 40-something dad with a newborn baby diagnosed at birth with DS. 
What keeps me going is the freedom of writing what I want, how I want, when I want, and sometimes having a dialogue grow out of it.

One post that makes you laugh?This was a tough one. When I go back and read my post "Schedule versus Routine: which is which", I laugh when I think about the day my wife and I had the "sign" battle over napping and playing. 

One post you are really proud of, for whatever reason?
"The sound of terror"  is my favorite post, so far.  When I read that Ethan Saylor's last words were "I want my Mommy", my heart cracked in 2.  It breaks my heart to think of someone in that much terror that they cry out such a primal plea for help and mercy.  The idea that someone's child could die in such a state of fear cuts me to the core.

I wanted to try to help others experience become aware of the intensity of his last moments; I believe that change only comes when powerful emotions  have nowhere else to go.


How have you seen your blog/blogging style change and how would you like to see it develop?
I am still working to find a voice for the blog.  I am open to ideas - from anyone and everyone.
I would like the sketches to take a more central role in the blog, too.   
I even turned one of the doodles into a Note Card, and I'll be offering them on the blog in the next few weeks.

Where else can we find you online? 
You can find Little Bird's Dad in a couple places:
 
1) Facebook: Reposting stories about people with DS in the news, with a theme of "We Can Do That, Too!"
2) Pinterest (still trying to figure out the best way to use this creative platform)
3) Twitter: (never really got this platform, but Little Bird is on it)
4) May start using Google+1, LinkedIn, and other platforms, if the blog grows.
 
 

Monday, April 1, 2013

The Spotlight's On: Michelle Arthur of The Hailey Herald






 Name:  Michelle Arthur
Blog Name and URL:  The Hailey Herald  http://thehaileyherald.blogspot.com
Blogger or Wordpress? Blogger

Favorite widget or plugin?  
Feedjit.  I like seeing where my readers are from or how they found the blog (was it google, FB, or from another blog) and what they entered as a search.


Getting to Know You:
What's One Thing People Don't Know About You?  
The only career I really ever wanted was to be a mom.  My second choice was teaching and I graduated with a bachelor of arts in mathematics and a minor in Business Administration.  I've worked for a coal mining company, a cabinet manufacturing company, an amusement park, a homebuilder, a waterpark, a bank, a county job and family services department and lastly a drug testing company (yes, a urine collector).

Dish you would bring to our community picnic:  
Either a giant fruit salad (the boys are so picky about potlucks) or some rich chocolatey dessert that I really want to eat, but don't want the entire dessert in my house because I will eat it all.

On Blogging:

What got you blogging and what keeps you going?  
Blogs were a saving grace for me while Hailey was in the NICU and while awaiting her open heart surgery.  I could read them at 2 in the morning while most of the world slept.  I didn't have to face anyone.  I didn't have to speak about anything.  I continue blogging in the hopes of changing people's hearts and minds about Down syndrome.  With a birth diagnosis, I felt guilty that I was so upset and thought it wasn't normal.  Reading blogs helped that.  Hopefully other mothers can read Hailey's blog and realize the emotions are normal, they are not alone and that life will get better!

One post that makes you laugh?  
I really need to learn to write funny.  This one makes me laugh because Hailey truly is a hurricane.  http://thehaileyherald.blogspot.com/2012/11/hurricane-hailey.html

One post you are really proud of, for whatever reason? http://thehaileyherald.blogspot.com/2013/01/wanting-others-to-see-now.html
and also this one... 
http://thehaileyherald.blogspot.com/2013/03/i-dont-miss-it.html


How have you seen your blog/blogging style change and how would you like to see it develop?  I'm afraid my blogging is getting more boring. I don't feel like my content is as good.  I am a very emotional writer and the emotions aren't as new and raw as they once were.  Hopefully I can improve on that and find more topics that will grab other's attention. I will say I do not sugar coat.  I am honest with how I feel, if I am mad at the world because #47 affects so much, or if I'm elated about something most people find trivial. 

Where else can we find you online?
 I'm on FB and Pinterest under my name.  I just joined the rest of the world this past week with a smartphone...I have to ease into some of this technology :-)


Thursday, March 28, 2013

The Spotlight's On: Anna Theurer of The Chronicles of Ellie Bellie Bear

Name: Anna Theurer
Blog:
The Chronicles of Ellie Bellie Bear
http://ellietheurer.blogspot.com

Blogger or Wordpress?
Blogger. I have entertained the idea of Wordpress and have even dreamed about switching over and yet, I still sit on Blogger because I am lazy.  Er too busy running after my spider monkey toddler to actually sit down and make the move.

Favorite widget or plugin?
I am going to assume widgets are those things where I sneak into the blog's html code, add some semicolons and brackets, and then something wonderful pops up on the side bar?  If so, I like the LinkWithin one for two reasons:
1. I actually manipulated the html correctly and got the widget to work.
2. It increases blog readership.  Older posts of mine are still circulation thanks to this widget.

What's one thing that people don't know about you?
My blog reveals pretty much everything---Ellie's triumphs & antics, my fears, my shortcoming, my witty sense of humor (and my conceitedness apparently!).  I played guitar in a metal band called "Kringe".  We never performed live and we were not any good.  I worked/volunteered in 3 different libraries in 3 different states (no, I do not have a degree in library science :-) while going to college and I worked in a school uniform store.  I can name over 20 types of plaid.


While we are at it, what's your theme song?
For some odd reason I have a non-Wiggles song in my head--Queen's Another One Bites The Dust.

Dish you would bring at our community picnic:
I almost always bring drinks and dessert.  You cannot accidentally give people food poisoning that way and every picnic needs chocolate!


On Blogging:

What got you blogging and what keeps you going?
When the Chunky Chicken was born, we were getting inundated with phone calls and emails.  I felt as though I needed to call each and every single person back immediately.  That is not good when you are tired, stressed, hormonal, and trying to keep a small little human alive.  I started the blog to keep everyone up-to-date on my own time.  The thing was, only my mother read the blog.  None of Andrew's parents or even my husband would read it!  They still don't read it.  However, I have met many people through blogging and it is that amazing network that has keep me going.  Blogging is a great way to vent and put words to your feelings and it is an added bonus when reader comment with support and advice. Also, I love sharing the awesomeness of Ellie.  That girl has some serious spunk and attitude and the world must be warned!

One post (that you wrote) that makes you laugh?

Mother-Daughter Sabotage: http://ellietheurer.blogspot.com/2013/03/mother-daughter-sabotage.html


One post you are really proud of, for whatever reason?

Moving Past the Shame: http://ellietheurer.blogspot.com/2012/10/31-for-21-moving-past-shame.html

And because I feel that I should include one of my medical posts--When things go bonk, call the ambulance: http://ellietheurer.blogspot.com/2013/02/when-things-go-bonk-call-ambulance-post.html


How have you seen your blog/blogging style change and how would you like to see it develop?
Being a pediatric nurse practitioner, I always included a ton of medical-based research in some of my posts as well as several photos of Ellie.  That still continues, but I also started to write a lot about my fears.  My fear for the future.  My concern about Ellie not communicating.  I started to write more about the r-word and other disability slurs.  Plus, I started to advocate more for orphans with special needs in Eastern Europe.  My blog really has no direction at this point and, honestly, I am not sure I want it to be about one thing.

Two blogs your love to read and why?
Nearly all the blogs I read are about Down syndrome because we have that many good writers out there, BUT since it is impossible for me to narrow it down to only two, I will give you non-Ds related blogs:

http://thumbinmouth.blogspot.com  This is a brutally honest blog about my friend's son, Jack who has tuberous sclerosis, seizures, and was on the ketogenic diet.

http://www.aquiltingsheep.com  Amy is constructs the most amazing quilts.


Where else can we find you online?
on Facebook:
http://www.facebook.com/stopdisabilityslurs -Stop Disability Slurs
The Chronicles of Ellie Bellie Bear on FB
@EllieBearMama on Twitter
Anna Theurer on Google +




Monday, March 25, 2013

The Spotlight's On: Tracy Churchman of Ty's Adventures

Name: MOOOOOOM!!! Oh, oops, you mean my other name... Tracy Churchman
Blog Name and URL: Ty’s Adventures www.tysadventures.com
Blogger or Wordpress? Wordpress
Favorite widget or plugin? Shareaholic (on the days it likes me & does what it’s supposed to do)
What’s one thing that people don’t know about you? I am deathly afraid of horses...ok, so maybe the horses know this, but people don’t.
While we are at it, what’s your theme song? “M’nah-M’nah” by the Muppets.
Dish you would bring to our community picnic: Artichoke Dip, yeah, I’m fancy like that.
On Blogging:
What got you blogging and what keeps you going? 
I used to fill up notebooks when I was a kid of stories I’d make up & hide them in my closet to never see the light of day. Then I grew up (a little) and someone said you have a different point of view, you have a story to be told, you should start a blog! So here I am 6+ years later, but in blogging years does that mean it’s really been like 12?
One post (that you wrote) that makes you laugh? 
Ty’s Tip of the Week ~ Ferrari. The boy literally DOVE through the open window of a neighbor’s brand new Ferrari parked down the street from our house and pretended to drive it, I presume because he has only ever seen pictures of such a fancy car; that and his inner-male took over and said “SHE MUST BE DRIVEN!” At the time I wanted to bury myself in a hole somewhere,and never come out, but now it’s pretty hilarious.
One post you are really proud of, for whatever reason? 
 I’m really proud of what App-ucation Month continues to morph into year after year and the awareness I’ve been able to generate. If even only to my small circle of friends and family, at least I made one person think a little differently about what people with Down syndrome are capable of. If all goes according to plan, Ty & I will be gifting a student from our school district with Down syndrome an iPad in 2014.
How have you seen your blog/blogging style change and how would you like to see it develop? 
 I care a lot less about what other people think over the years and have been able to let more stuff fly onto the page. I hope this continues because If you were to meet me you’d probably say I’m one of the shyest/quietest people you’ve ever met.
Two blogs you love to read and why?
 http://www.chudleighweddings.com/ My super talented friend from high school, Britt Chudleigh constantly inspires me to push myself in different directions.

I have never actually met-met Toby Price, but we move around the same circles and he’s constantly inspiring me, making me laugh or giving me advice on the latest tech for Ty http://about.me/jedipadmaster
Where else can we find you online? 
Facebook https://www.facebook.com/pages/Tys-Adventures/106416779391138
Twitter www.twitter.com/tysadventures
Pinterest www.pinterest.com/tysadventures
www.dandelionmoms.com
...and The Muppets YouTube Channel laughing my butt off with my boys.