Friday, October 9, 2015

{31 for 21} THANK YOU!

Our Buddy Walk team raised over $600 for our local Down syndrome group.

Since we just had a baby, that is huge!  If you want to join the fun, sign up here.

Some throwbacks to our first two walks....

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Thursday, October 8, 2015

Wednesday, October 7, 2015

{31 for 21} Comparing.

I have two kids.  My 4.5 year old has Down syndrome.  My 2.5 week old does not.  And while I absolutely don't compare them for the sake of value, there's not doubt that a medically complex pregnancy and childbirth of a first child are drastically different from a medically mostly-straightforward pregnancy and scheduled c-section with a second child.

There were some major differences prior to their births.

Ellie: Monitoring at least monthly including high level ultrasounds, weekly doctor visits with my OB and MFM for non-stress tests in the last couple of months, becoming twice a week by the end.  A very painful CVS procedure to check out her chromosomes.  Fetal echocardiograms and intense scans and an ever-changing birth plan to accommodate each medical issue.  A billion and five ultrasound pictures.

Caroline: Doctor visits for a grand total of four ultrasounds.  One was an extra because I was bleeding.  (She obviously was fine.)  Another extra doctor visit for a blood draw because Verifi messed up her Down syndrome testing by sending her blood the long way to California in a snowstorm.  Birth plan consisted of "Go have a c-section."  Very few ultrasound pictures, some of which big sister accidentally smushed while grabbing them.

At birth, there were some more differences.

Ellie: 36 hours of induced labor followed by emergency c-section, me in a total daze, baby straight to NICU and then transferred to Children's hospital.  Husband went with baby.  I recovered at the hospital where I delivered.  No new baby classes because I would get info in NICU.  Baby had surgery right away and couldn't eat for two weeks.

Caroline: Walked to OR for c-section, where I had a panic attack.  Baby roomed in with us.  I did a lot of throwing up.  Baby nursed right away.

Ellie, about 2 months old.

At home, there are differences:

Ellie: Started nursing at 8 weeks.  Nursed her quietly on the couch where she could be peaceful.  By the time Ellie came home I was mostly recovered from c-section.  Billions of photos.

Caroline: Wherever I nurse her, Ellie is going to show up and get in her face with kisses.  I came home in major pain and unable to lift carseat or preschooler.  Have my own photography business with exactly three pictures of Caroline and some bad iPhone photos of her.

Caroline, about a week old.

And similarities:

Both my daughters: Prefer to sleep while being held.  Eat like it's their last meal ever.  Look alike.  Make me wonder why we bought that expensive crib since it seems to be reserved for stuffed animals.  Make my life better.  Make me laugh.  Make the same faces.  Wear me out.  Don't have completed baby books (although I started one for Ellie).  Were small babies (Ellie, 20 inches, 6 lbs. 10 oz.  Caroline, 19 inches, 6 lbs. 13 oz.)
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Tuesday, October 6, 2015

{31 for 21} Favorite Tools and Tricks.

When it comes to learning activities for Ellie, I have tried almost everything.  As a special education and elementary school teacher, I own a lot of this stuff and owned much of it before Ellie was born!


Junior Learning Rainbow Numbers Magnetic Set - We use this to work on number sense and matching digits to the number of dots.

Reading and Math:

Everything from DSFOC.  Seriously.  Click here.  You have to make an account but they don't spam you at all.  It all includes directions.  I love this stuff and use it with students who benefit from a visual approach.

Here's Ellie "reading" a book she sort of memorized.  (She had it memorized it and outgrew it.  Now she's "reading" to sister.  She has the gist of it right but not all the words.  It should be "A cow says moo.  A sheep says baa.  Three singing pigs say LA LA LA.  No no you say.  That isn't right.  The pigs say OINK all day and night.")


See and Learn is one of my favorites, although we've fallen off that track a bit after Ellie learned the vocabulary.  She never did sight reading with these cards, mostly because we got busy.

For learning letter sounds, it's super annoying, but google "Dr. Jean."  Ellie loves every song and knows her sounds.  Awesome, right?  Now go buy earplugs.


This is what I get asked about most frequently because Ellie has great speech for a kid with Down syndrome.  I also have the least number of speech tips and tricks.  Ready?

What worked for Ellie?
* Go to preschool.
* Have great Early Intervention.
* Have a mommy who talks a lot.
* Have a natural strength in speech.
* Read a lot of books.

What tools do you love?
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Monday, October 5, 2015

{31 for 21} How Much Does She Understand?

How much does Ellie understand?

We haven't undergone formal language testing in nearly three years, and the last time Ellie was far from cooperative.  (Hint: At the time, she had 75 words/approximations.  She used the following - "no," "no thank you" and "all done.")

But I would assume that Ellie understands more than many people guess.

Some examples:

* She CLEARLY understood that baby sister would be coming.  She did everything from try to give sister away to prepare her room.  And for the record, Caroline's room has purple everything and Ellie's has pink.  Ellie picked out almost every item in Caroline's room that is not a hand me down.

* Moving threw her off and we moved less than two miles away.  (Virtual house tour coming soon!)  When we stopped by our old house to grab a few things we'd left, Ellie was in tears walking around just repeating, "It's empty.  The old house is empty."

* Friends who move break her little heart.  We live in a very transient area.  This happens a lot.  We get bad behavior and tears for a few weeks each time.

* Ellie also has been aware that "Mommy has an ouch on her tummy" and that's why I can't do a lot right now.  She's also been able to articulate (or repeat a few days later) that "Mommy is happy but Mommy hurts."

So I think she understands a lot but doesn't always have the language to explain her feelings fully.  The times she understands and can't explain, we see an increase in negative and clingy behavior.  Moving, friends moving, getting a sister.... those are all big changes going on right now for her, and we've seen some acting out.  But overall, Ellie has done a great job with a new baby around, giving Caroline lots of hugs and being as gentle as she can be.
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Sunday, October 4, 2015

{31 for 21} Explaining.

Ellie, at age 4.5, stands a head shorter than her peers.

She's slower on the playground and speaks less clearly and potty training is harder.

And she wears glasses (most of the time).

Those are things about Ellie that are different.

Sometimes, other kids ask about those differences.  (And sometimes, in the case of our sweet neighbors, it takes 4+ years of knowing Ellie and another kid to point out the differences to notice.)

This is what I'd ask you to say to kids who ask.

Ellie has something called Down syndrome.  She had it before she was even born and she'll have it forever.  She's not a baby even though she's small.  It means some things are harder for her - things like learning to walk and run and even talk.  It means some things are easier for her - like how she's really flexible and can do the straddle really easily at gymnastics.  And some things are just different - like how she's pretty short but still 4 1/2, or how she wears glasses or needed her heart fixed when she was a baby.  And some things about Ellie are the same as all other kids - she has feelings and can be a good friend.  She loves to play kitchen and babies and animals.  Ellie is exactly who God made her to be.

Yep, all phone photos.  It's rainy and gross and we haven't been outside much.... or done a whole lot.  Maybe if the weather clears up this weekend I'll do a little photo session with Ellie. 

Also here's a couple of my favorite books about Down syndrome.  (They're affiliate links.)  I've purchased these for friends before to help them understand.  The first book is better for older kids and the second is better for younger kids.  While My Friend Isabelle doesn't directly mention Down syndrome, it's great to show other kids the same age as Ellie because of the comparisons.

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Saturday, October 3, 2015

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