Tuesday, March 28, 2017

Happy Seventh Birthday, Josie!

Seven years ago today, our dream came true when Josie entered the world.  She was tiny little nugget; so beautiful and yet so fragile.  Within a week, we joined her at her bedside in the NICU and we fell in love.
It's hard to believe that seven years have passed.  That sweet little bundle of blankets and cords is now a strong, sassy seven year-old.
 She continues to radiate charisma that draws in everyone around her.  She fills the world with so much love.
 Today, we celebrate seven years of our precious Josie JoJo. 
What a gift!
 
Happy Birthday, Josie.  We love you!
 

Thursday, March 23, 2017

For Ms. Tickles...

Dear Ms. Tickles (Josie's nickname for her associate who always "stalks the blog" when Josie goes missing from school), 

Greetings from the infirmary located between Mom & Dad's nightstand and the wall.  Josie received a Strep diagnosis a couple of days ago.  Unfortunately, the situation declined.  In the wee hours of morning, I awoke to the unusual sound of Josie whimpering.  She had a temperature of 105.  I called the pediatrician on call and followed her instructions.  This morning, we went into the office to be examined.
One blood draw, chest x-ray, nebulizer treatment, and mucous sample later, we were able to bring Josie home with some stronger antibiotics designed to stave off pneumonia.  We have a nebulizer and a pulse oximeter at home so we can keep an eye on her.  We certainly don't want a repeat of last year (CLICK HERE).  

This afternoon has consisted of a big cuddle and movie fest on the sofa.  That is, until a spike in temperature and a lap full of vomit put a damper on our snuggle session.  After a lukewarm bath, some Pedialyte, more ibuprofen, antibiotic, and some fresh pajamas, Josie seems to have perked up.  

Josie will sleep in her special sick spot where Mom can pop up at a moment's notice within the night, and catch vomit in the barf bowl better than Willie Mays in his prime!  (Confession: I had to enlist in Travis' help to make this metaphor work).  Gotta go - Adele's "Hello" came on and Josie just can't help herself from belting.  I better have my bucket ready in case those high notes trigger an episode! 

We appreciate any and all prayers for Josie's continued improvement.  We certainly don't need a repeat of last year's hospital siesta.  We'll keep you posted.
(Inside joke alert: Somehow the "W" from this puzzle mysteriously went missing).

Wednesday, March 1, 2017

3:1:17 - Spread the Word to End the Word

Today is "Spread the word to end the R-Word" day.  When the word "retard" or "retarded" are used as slang for "stupid" or "dumb," an association is created between a person who is diagnosed with mental retardation (today, referred to as "intellectual disability") and being stupid.  Even if no harm is intended to the special needs population, using the "R-word" reinforces hurtful stereotypes that individuals with developmental delays are less valued members of humanity.  


The word stings.

That's why today, the special needs community comes together to ask you to take the pledge to show respect to everyone by removing the "r-word" from your vocabulary.  Ask your friends to do the same.  If you need some tools for how to initiate the conversation, click HERE.

Do it for Leanne.  Do it for Josie.  

Thursday, February 16, 2017

Valentine's Day 2017: A Collection of Photos That Will Never Be Displayed In Our Home

Having lovely photos of these three girls dressed in coordinating, holiday-themed attire, is one of the most wonderful things about any given holiday around here.  Valentine's Day is the perfect opportunity to crank up the feminine and frilly quotient and celebrate the sisterly love.  So we rushed to get ready quickly that morning so that we would have a few moments to spare to capture the spirit of Valentine's Day with a sweet photo before it was time to head to school.

Um...I've seen photos of hard-core rappers on the covers of albums that exude more warmth and approachability than Josie is giving us in this photo.

 The warm embrace I envisioned turned into a head lock...
 The sisterly love is truly palpable, isn't it?
And like any toddler, Biddy demonstrates the patience and attention span of a fruit fly.  She bailed.
 It was time to take the girls to school so when Biddy and I returned home, we decided to try again with a backdrop.  Apparently my vision of an adorable Valentine's Day cherub clashed with Biddy's vision of a slick used car salesman...
 Once again, Biddy's interest in abandoning the toddler 'tude and coorperating equated to Donald Trump's interest in abandoning Twitter and keeping his mouth shut, and she was gone...After school, I picked up the girls all excited to give it one more try.  But as soon as they got in the car, I realized Eros had missed the mark and no one was in the mood for my Mamarazzi runaround.  That, and the perfectly coiffed princesses I sent to school that morning returned looking like ragamuffins.  Ketchup stains on one, avocado stains on the other, and don't even get me started on the status of the hair.  Vidal Sassoon just rolled over in his grave.  But I didn't come this far to give up!

"Come on, Josie!  Look alive!  Sit up straight!  Smile!!!!"
 "No, no, no!  Don't do that because you'll knock over the..."
(insert audible, frustrated sigh here) 

"Yeah, Lydia...
 ...tell me about it, Girlfriend.  Welcome to motherhood."
That pretty much sums it up!  We hope all of our readers had a terrific Valentine's Day filled with love and chocolate.  If not, follow my lead and pour yourself a generous glass of red wine!

Sunday, February 5, 2017

Down Syndrome Blogs

I recently asked my friend, Deanna, fellow Down syndrome blogger from Everything and Nothing from Essex, if there is a whole new generation of Down syndrome bloggers who document their babies' journey as we have been doing for almost 7 years now.  She said that she believes that the new moms tend to utilize Instagram, Facebook, and other social media to share their stories these days.  

Maybe I'm behind the times sitting here typing away on a laptop on this ancient blog but I am kind of partial to it; besides, sometimes I get a little too wordy for an Instagram post.  And don't even get me started on Facebook.  That's just not my scene.  But I digress...I still receive emails from new parents who have stumbled upon our blog and most of them don't even address me by name because they don't know my name.  So today, I hope to rectify that by sharing a synopsis of our story and the evolution of this blog.  (Gee, I sound like a 5th grader giving a book report).
Hi, I'm Elizabeth.  The dark haired baby pictured in the photo above.  That adorable blond-haired girl in pigtails holding me is my big sister, Leanne.  Yes, she is my biological sister despite what it looks like.  And yes, she has Down syndrome.  This picture was taken *ahem* thirty-some-odd years ago.
What was it like growing up with a sister with Down syndrome?  I don't know.  Leanne was the only sibling I had, so she was "normal" to me.  When I grew up and moved away for college, I missed my sister a lot.  To help fill the void, I started seeking out opportunities to volunteer within the special needs community.  After all, this is "normal" to me.  This feels like home.  These are my people.

For most on the sibling experience, click HERE, HERE, HERE, and HERE.
In college, I met this total dreamboat named Travis.  Travis was the sweetest, kindest, most patient and gentle young man you'll ever meet.  He loved me and just as importantly, he loved Leanne.  She loved him, too.  We decided we better keep him around long-term so when he popped the question, I said "Yes!"  Four months later, we skipped college graduation (don't worry - they mailed us our diplomas) and we got hitched!  Leanne was my maid of honor (or "Best Woman" as she preferred to call it) because, I mean, who else?
The next 8 years were quite adventurous.  Travis' career had us living in 7 different cities within 6 different states.  When we ended up back in the Midwest, just 3 hours from my mom and Leanne, and it felt right to settle down and start a family.  I worked in financial development for a nonprofit doing grant writing, and I had been volunteering at this organization that provides care and programs for children with special needs.  That's where I fell in love with this chunky little baby boy with Down syndrome.  I came home and talked about him constantly.  I don't remember the exact moment where I declared that I wanted to adopt our own baby with Down syndrome, and Travis doesn't either, but the adoption journey became our next major adventure.

For more on adoption, click HERE, HERE, and HERE.
The 3 short months it took to complete our home study was as long as we had to wait for placement.  Enter Josie.  The most life-altering blessing that had ever been bestowed upon us.  But the real magic was seeing the immediate bond between Josie and Leanne.

To see some videos of Josie and Leanne's relationship, click HERE, HERE, and HERE, or check out the hashtag #JosieAndLeanneLoveFest
And this, my friends, is where Confessions of the Chromosomally Enhanced started.  From 2010 on, this blog is where we've documented our family's journey.  From growing up with a sibling with Down syndrome to Josie's health challenges to milestones...it's all here.  

A friend was recently telling me that when you give birth to a baby with Down syndrome, the medical staff gives you a list of every possible challenge you can encounter along your Down syndrome journey.  Since adopting Josie, I gave birth to two typically developing kids and no one ever gave me a list of all of the challenges they may encounter.  Can you imagine?!  Your child may get cancer, they may be in a car accident, they may experience teen pregnancy, drug overdose...If every mother were handed a list like that, leaving the hospital with this newborn would be trepidatious instead of joyous.
That's where Down Syndrome blogs serve the simple purpose of showing glimpses into the daily lives of people who have a family member with Down syndrome.  As a Down syndrome blogger, I offer both the sibling (you have to check out Aunt Leanne's Top 5) and the parent perspective.  
And while I've documented the challenges that we have faced, I hope the overall tone of Confessions of the Chromosomally Enhanced paints a positive picture of life with Down syndrome.  Leanne is the single most influential person in my life and if you ask Josie, she'll tell you that she's my "dream come true."  She is!
We welcome feedback of any Down syndrome blogs that our readers recommend.  We welcome questions that you would like us to answer.  And if you just can't get enough of CCE, check us out on Instagram @CatfishWithKetchup.  Updates are more frequent there.

Thanks for reading!
Elizabeth





Thursday, February 2, 2017

Behavior Update: Part 3 Handling Changes in Routine

In Parts 1 and 2 of our "Behavior Update" series, we talked about creating fun distractions to encourage compliance, as well as the importance of routine for children with cognitive delays.  But let's face it - life doesn't always go according to plan.  Routines need to be modified sometimes.
Explain changes to the routine in advance using a visual aid:

We learned this one the hard way.  So hard that it landed us in a week-long intensive feeding clinic in another state!  After Christmas one year, our holiday visitors left, and Travis left to go on an international business trip, and suddenly it was myself, Merryn, and Josie alone in a quiet house.  Josie's behavior went from bad to worse - especially at mealtime.  She refused to eat anything at all for days.  Not only did she refuse to eat, but she would throw any plate or cup that got within 2 feet of her.  

The behavioral psychologist asked "Did you explain to her what was going to happen between your visitors departing and Dad being gone for a couple of weeks?"  Um, no.  We sure didn't.  Josie was just shy of 4 years old and we didn't really involve her in a big family strategy session about holiday guests and Dad's business travel schedule.

FAIL.  MAJOR PARENTAL FAIL.

It's easy to take for granted that Josie is a pretty happy little kid who is off in her own little world playing with her toys and dancing to music.  We assume she doesn't understand or care about the details in our lives.  But in the example above, her sudden food boycott and defiant dinnerware throwing was her way of saying 'I don't know what is going on.  I don't know where my dad disappeared to.  I'm confused and scared and unhappy.'
(To read more about our experience at the feeding clinic and how we learned to handle Josie's mealtime behaviors, click HERE and HERE).

Now, when things are going to be out of the ordinary, I make a simple chart like this and we go over it with Josie every day.  
Travis travels a fair amount with his job and now, he always sits down and tells Josie that he's leaving and when he'll be back.  If we have doctors appointments or visitors coming over, we explain that to Josie, too.  

And if it's a really big change happening like moving, starting a new school, or surgery, I will write a more detailed social story.  For examples, click HEREHEREHERE, and HERE.

Even when it seems like your child will not understand, pay attention, or care, it's still worth explaining things.  Josie's associate recently told me "It seems like she's not listening and she's off in outer space and then she'll say something relevant that makes me realize she was taking it all in - even when it seemed like she wasn't focused at all."

I make the charts and they work.  The more we go over the information, the better Josie handles the change.  And when Josie is prepared in advance, she is more likely to be compliant.  And when she's compliant, we're all happier.  And I drink less.  Just kidding...kind of.



Wednesday, February 1, 2017

Behavior Update: Part 2 Why Having a Routine is the Key to Compliance

In the summer leading up to Josie starting kindergarten, I was a nervous wreck about getting all 3 girls up, dressed, fed, and out the door on time.  Mornings are hard!  Having to make everything happen when Josie is armed with her stubborn 'tude and a determination to resist my every directive is misery!

While I realize that Von Trapp Family Whistle Protocol is probably not realistic (Please tell me you understood this reference.  If not, click HERE and don't come back until you've watched the film in full entirety), I needed some sort of a plan so that my girls' school tardiness rap sheet doesn't land them in juvie before they even reach first grade.  

IF YOU READ NOTHING ELSE IN THIS POST, READ THIS:  
Individuals with cognitive delays thrive on routine.  Why?  The world moves at a faster pace than they can comfortably process.  Creating a routine and doing the same thing in the same order every day is a tool that offers individuals with developmental disabilities a sense of control.  With predictability comes comfort.  
You don't have to take my word for it.  My beloved Down syndrome expert, Dr. Skotko, writes about it in his book:  


Sometimes what we as parents perceive as stubbornness or non-compliant behavior is the child's way of putting on the brakes and saying "Whoa!  I don't know what's going on.  I don't know why you're insisting that I do this with such urgency and I'm not comfortable!  I'm confused!"

Here's where Josie's morning chart helps.  I broke down the morning routine into a few simple steps that she can easily understand.  I added a visual for each step because kids with Down syndrome generally learn best with visuals.  We wake up at the same time and we do the same steps in the same order every day.
Step 2 is very strategic.  Josie loves affection.  A hug is a great way to get her in the right frame of mind to want to cooperate.  Now that we've been using this chart for months, Josie no longer needs to hold the actual chart but she still references the steps.  Once she has completed the steps on her chart (we added cleaning up her books), she earns an incentive.  Most days, it's a singing animal that is restricted - it only comes out after the morning steps are complete and then it is put away again for the next morning (that way the novelty is preserved).  Another very powerful incentive is my phone - she loves to listen to one kid song on YouTube.

This may seem like a hassle but it quickly becomes habit and after a few weeks/months, the chart itself is no longer needed.  It's completely worth it to help the child work towards the same goal without a battle!

Tune in tomorrow when we talk about how to prepare a child for change when the standard "routine" needs to be modified.  We learned this lesson the HARD way!