Thursday, January 19, 2017

Christmas 2017 at Mama Hop's

Here we are, almost a month later, and I'm just now posting pictures from Christmas at Mama Hop's.  Welcome to life with little ones, folks.  

We were welcomed to Mama Hop's house with open arms, a delectable bounty of Christmas delicacies and an abundance of very thoughtful gifts.  
  Mama Hop scored this super awesome singing Santa Claus.  It's not your standard, run-of-the-mill singing animal.  He was a top-of-the-line luxury Santa Claus with all the bells and whistles like a light up snow globe.  At the end of his song, he yells "Merry Christmas!" to which Josie replies "Happy New Year!"  Every. Time.  Now that Christmas has passed, she still has that Santa serenade her multiple times in a row on a daily basis.  He keeps the Christmas spirit alive at our house! 
  Apparently selecting top notch gifts runs in the family because Leanne proudly gifted Travis this nifty Star Wars tee shirt.  
  And while everyone was joyously exchanging gifts, I happened to see Josie wandering around behind the sofa and she appeared to be munching on something.  With the silence and stealth of a curious mom, I followed her to uncover the source of her contraband confections...
  A Ha!  Busted!  

  Mama Hop should have known that a platter of Christmas cookies within a child's reach wouldn't last long.  The funny part is that Josie is the last one you'd suspect among the three ornery whippersnappers who had invaded her home.  That's what was so brilliant about Josie's cookie heist.  So brilliant, in fact, that I let her go back once or twice before moving the platter to the top of the refrigerator to protect us all from the torment of three kids on sugar highs!
  And, as always, the love fest between Josie and Leanne took priority over gifts, food, or anything else.   
   Sadly, Lydia was in the throes of a nasty cold so we didn't leave the house or make plans to see friends - she just wasn't up for it and we didn't want to inflict our germs on anyone.  However, we still managed to have plenty of fun.  We enjoyed a dance party in Mama Hop's basement.  The girls got to see a real record player with 40+ year old vinyl records.

Ah, ha, ha, ha, stayin' alive, stayin' alive
Ah, ha, ha, ha, stayin' aliiiiiiiiiiiivvvvvve
   Then, the Chief Hug Officer showed up...
  Let me tell you, these days I struggle to pick up Josie in her 38 pound glory and yet Leanne effortlessly hoists her up and carries her around the house as though she were still an infant.  And Leanne is all of 4' 8''!
  My bed is calling so this blog post must come to an end.  Thank you to Mama Hop and to Aunt Leanne for hosting a lovely Christmas visit.  We had a wonderful time!
  Hopefully you'll stop by again soon and see some fresh, new posts because I have a long list of Down syndrome related topics that I've been eager to address.  Fingers crossed for some spare time and energy! 

Saturday, December 24, 2016

2016 Christmas Card Reveal...

We have a little tradition of doing Christmas cards that are, well, reflective of life around here: less formal and more this-place-is-infested-with-kids-may-as-well-find-the-humor-where-you-can.  This year, it almost didn't happen.  It's just been a whirlwind of a holiday season and I can't quite put my finger on why.  I went back and forth on whether or not to send Christmas cards.  I thought I had settled on "No.  Definitely not gonna do it.  Maybe next year."  But, then YaYa gave the girls these adorable flannel nightgowns and I just had to try.  It turns out that the photo shoot was a disaster.  My blood pressure rises just thinking about it.  I came "this close" to deleting all of the photos off of my camera before even looking at them.  That's how bad it was.  

The card that became the 2016 card was not the scene I originally envisioned.  The scene I envisioned required cooperation from my children.  I should have known.  But sometimes, the candid, unscripted moments turn out to be the best photos.  Without further ado, the CCE 2016 Christmas card reveal:
It turns out there was a "production delay" at Tiny Prints and the cards were late arriving to my house.  Then, I ran out of cards.  I apologize to everyone who expected a card in the mail and did not receive one.  Please know we send our Christmas love, missing card notwithstanding.  


And one more thing...
Tell me about it, Santa.  Welcome to my world.

Sorry for the brevity - I've got to get back to the chaos!  Wishing all of our readers a fun-filled holiday season and a blessed 2017!

Sunday, December 4, 2016

Josie Goes to Kindergarten: Handwriting Tips

At the end of the summer, I was talking to Josie's speech therapist about how torn I was over whether or not to continue private therapy when school started.  While I've always been a huge proponent of therapy, I couldn't imagine Josie adjusting to the transition of being in school all day and then having the energy to participate in PT/OT/Speech afterward.  And even IF we could land one of those coveted 4pm time slots, I'd be shocked if Josie managed to stay awake on the drive to the therapy center.  

Her speech therapist told me to try the school-only route.  She said I'd be shocked at how many natural opportunities there are to practice speech and fine and gross motor skills throughout the school day.  She said I may even see more gains while Josie was at school vs. home for the summer and if not, I could always enroll her in supplemental therapy later.  

Boy was she correct!  Honestly, I've been blown away by the progress Josie has made since starting kindergarten.  Here I thought that we were giving Josie so many opportunities to learn and practice skills throughout the day at home.  
In addition to her private therapies, we've always utilized our state respite services to have college girls come to the house and reinforce the concepts Josie is working on in therapy with her.  It's like having tutoring sessions for several hours a week.  So I thought we were doing as much as possible to provide Josie with an academically-mindful, developmentally rich environment.
Over the summer, I blogged about some of the ways we were preparing Josie for kindergarten.  There was a huge emphasis on writing/drawing because that was an area that was a big weakness for Josie and it was something that would be a large part of the kindergarten day (to read it, click HERE).  So imagine my surprise when she went from being an absolute pistol during our home handwriting practice sessions to her teacher emailing me this: 
The phonemic awareness?  The handwriting?!  Did you see the handwriting?!?!  The improvement that we've seen in the few short months since she started school is absolutely phenomenal.  I posted another one of Josie's assignments to Instagram and I got asked for tips so here are a couple of strategies that we've employed at home and at school:

1.  Free Tracing Font - I discovered this tracing font that can be downloaded quickly and easily, and best of all - it's free!  It's from www.dafont.com and it's called "KG Primary Dots."  To download it, click HERE.  But keep in mind...
 The main benefit of this font is that you can customize the lesson to your child's interests.  Josie is really into Mickey Mouse these days.  She'd much rather complete this worksheet than a generic one that you might find in a kindergarten workbook.  
The font is also helpful in teaching a child to write his or her name.  If you don't want to mess with downloading the font, check out this website where you can type in the child's name and simply print a tracing page: CLICK HERE.  

2.  Wikki Stix - This tip came from Josie's kindergarten teacher.  She uses Wikki Stix to guide Josie's handwriting.  Wikki stixs are wax sticks that can be molded into shapes.  The teacher just places a stick on the line that Josie is writing on to create a tangible barrier to prevent her from sloppily writing all over the page.  You can buy them at all sorts of places.  This kit from Amazon looks cool because it has guide cards so kids can form letters out of the sticks.  But shop around - the prices of these things vary so much!  

That's it for the academic portion of our "Josie Goes to Kindergarten" update.  Stay tuned for the social portion.  It's a post I've been meaning to write for some time.  


Friday, December 2, 2016

Thanksgiving 2016 (and a nice stumble down Memory Lane)

We celebrated Thanksgiving 2016 with Travis' parents, YaYa and Papa.  It was a terrific time filled with food at fun.  As usual, my attempt at a grandparent photo was relatively unsuccessful...
 ...but do you know what was irrefutably successful?  Our Christmas gift exchange!  YaYa has a finger on the pulse of what kids want.  Check this out:
 Squint a couple of times, rub your glasses on your tee shirt, and look again; that's right - it's a Hatchimal!!!!  I will admit that I live under a rock and I had NO CLUE what a Hatchimal is.  But YaYa is on top of it and she scored THE toy of the holiday season!  You would not believe how that egg was passed around and cuddled and caressed like I laid it myself.  Merryn was sprinting to the bathroom and back with lightning speed because she didn't want to miss the moment when it actually hatched.  

Speaking of coveted gifts, Josie's favorite gift from YaYa and Papa may not be a pop culture craze but her enthusiasm rivals the Hatchimal mania that has swept the nation...a cute stuffed bear that sings "Que Sera Sera".  We heard that little song about 59,678 times back-to-back without so much as a second lapsing between plays, thanks to Josie's enthusiastic button pushing.  Within minutes, she knew all of the lyrics and sang along with the biggest smile on her face.  
 And of course there was the mega hit personalized stationary set complete with weekly planners and checklists that figuratively and literally had Merryn's name on it, along with Merryn's beloved emojis.  For real, Folks.  The holiday gifts were epic!
And, let's not forget sweet Biddy, who is modeling the classic Christmas flannel nightgown; one of the many precious additions to the girls' wardrobes from YaYa and Papa.  This flannel nightgown may be making a special appearance in the near future so stay tuned for the infamous holiday card edition of CCE.

Click on the links below for a drunken stumble nice stroll down memory lane:
2013 (my personal favorite)
2014 (no, wait - maybe this one is my favorite.  The year that zapped me of so many brain cells that I forgot how to count.  I'm still terrified to go back to the mall and face Santa again.  That was the year I earned permanent "naughty list" status.)

Wow!  We've been at this blogging thing for a LONG time!  It's kind of fun to relive the crazy circus that is our lives.  

But back to the subject at hand, we are thankful that we were able to spend our holiday with YaYa and Papa.  Family is a blessing.  We hope all of our wonderful readers had a joyous Thanksgiving, as well.  We are thankful for you!

Monday, November 21, 2016

Down Syndrome: Finding Hope in Hurt

I was offended last weekend.  I walked into a coffee shop and struck up a conversation with an older gentleman who was putting stickers on the paper bags that you scoop coffee beans into.  Full disclosure: When I'm out in the community, I'm always looking for prospective jobs that Leanne, Josie, or another individual with special needs could do and that's what drew me to him.  We started chatting at his daughter walked up and introduced herself.  Somehow, in conversation, I told them that I was on my way to a special needs conference and the older man interjects "That's what I need!"  It was intended to be a self-depreciating joke but it obviously missed the mark on the audience.  The daughter awkwardly jabbed him in disapproval and I'm sure the look on my face was a very clear mixture of shock and disappointment, without so much of a glimmer of amusement at his attempt at humor.

I walked away bitterly thinking 'Well, Leanne will NOT be working there!' 

That one offensive little comment haunted me all day.  It kept playing in my head, over and over, to the point where I was mad at myself because I just couldn't let it go.  And here's the frustrating part: Leanne and Josie receive countless positive comments.  Everyday, they inspire, encourage, and amuse people.  They truly bless peoples' lives with their presence.  So when the reception to my sister and daughter is so overwhelmingly favorable, why is the one thoughtless, ignorant comment that stings the one I can't get out of my head?
Because I felt like this was having a negative impact on my psyche, I challenged myself to think of it differently.  I told Travis about the comment over dinner and he laughed out of shock at the gall of the old man and he found humor in the irony that the joke could not have been targeted to a more hostile audience.  I told Travis, "But otherwise, he seemed like a nice old man.  In fact, he probably would have liked Leanne if she worked there.  I bet he would have been very kind and patient with her.  He just hasn't had experience with people with special needs.  He doesn't know better because he never had a chance to learn - that's not his fault."  

It was still a conscientious effort to stifle the sting and force myself to try and view the situation with the benefit of the doubt and I was incredibly proud of myself for trying, because I knew holding on to the hurt wasn't doing me any favors.  

I believe so much has changed generationally to support inclusive attitudes towards individuals with special needs that this type of unintended ignorance is fading (this is me giving the gentleman the benefit of the doubt that his comment was not intended to be malicious or hurtful).  I believe that the kindergarteners in Josie's class will not grow up to make jokes like this.  I believe they will not grow up to say the "R" word.  They know Josie.  They know better.  In the era that this gentleman was educated, he certainly didn't have any children with special needs in his class - probably not even in the same school.  

Hubert Humphrey's (Vice President of the U.S. under Lyndon B. Johnson) granddaughter had Down syndrome.  I found an article written by Hubery Humphrey's wife, Muriel, in the Chicago Tribute written in 1971 about their granddaughter, Vicky.  Let me warn you: the outdated terminology is jarring.  But realize that it was 1971.  If you can wade through the terms that are now considered offensive and extract the heart of the article, you'll find that the Humphreys' desires for their granddaughter are very similar to what parents of children with special needs still want for our kids: to be accepted and appreciated exactly as they are.  
http://archives.chicagotribune.com/1971/07/11/page/136/article/mrs-hubert-humphrey-our-vicky-is-retarded

I challenge you to read the rest of the article, "Our Vicky is Retarded," (Cringe!  I know!) and find parallels in the sentiments expressed and the objectives that we, as advocates in the special needs community, still value.  At the end of the article, Muriel talks about how she was contacted by a new mother who had a baby with Down syndrome and the mother said that by seeing Vicky on TV and by hearing the Humphrey's message of appreciation and love for Vicky, that she was incredibly encouraged about her daughter's future.  That underscores the importance of our advocacy efforts.


There will always be uninformed people who make offensive remarks under the guise of humor, but with exposure an education, the next generation will be enlightened and more accepting and kind.  I truly believe this and I have so much hope for the positive change that we will continue to see.


Tuesday, November 15, 2016

Aunt Leanne Blogs: wish stay forever


i miss you
girlsmis
pack your lunch
to
school
behave
shre
my
lap
top
family
nicees
good
meals
breakfast
and
lunch
and
dinner
get to
the
libaryran
pick
books
to
read
them
take to
school
tkake
class
room
 read
class
pete the 
cat 
i
love
white
shoes
stackbuks
choholae
chips
cholate
syup

whip
cream

ice
top
cube
wish stay
forever
tuesday
today
say frever
go
home
see mom

tomorrow
everbody
love
leanne






Friday, November 11, 2016

Social Media Pitfalls

When Confessions of the Chromosomally Enhanced started in 2010, it was a way to share photos an anecdotes with our family and friends who were spread out all over the nation.  Slowly, others began stumbling upon our blog and we started receiving really heartwarming feedback about how our family's story was a source of comfort for new parents who had just received a Down syndrome diagnosis.  Showcasing what a smart, competent, kind, funny, and loving young woman Leanne is offered a cool glimpse into the future for those parenting children with special needs who were unsure of what adulthood would hold.

The blog began to have a dual purpose: 1. a way for me to document memories 2. a way for us to advocate for individuals with special needs and hopefully create a more positive perception of what life with Down syndrome is really like.

Enter Instagram.  For those who don't know, Instagram is a quick and easy way to upload a photo or a short (60 seconds or less) video and add a brief caption.  I joke that Instagram killed the blog star (remember that song from the 80's "Video killed the radio star"??  Anyway, I date myself and digress...) because Instagram has made me all but abandon the blog.  Instagram is a lot faster and easier.  For the blog, I have to upload photos off of my camera and organize them by very specific filing parameters imposed by Mr. Technology (he's very laid back about everything so when something matters to him, like having an organized home network, I try and play along).  I edit the photos, upload them to the blog, and then sit down and draft thoughtful posts about specific topics relevant to Down syndrome.  Then, I edit said posts, wait a day or two, read it again...and then, maybe post it.  This requires a lot of uninterrupted "spare time," which is an elusive concept that evades this frazzled mother of 3 on a daily basis.
With Instagram, however, I use my phone to take a photo, click on the Instagram app, add a little caption, and within 30 seconds, the memory is stored.  I suspect that because I'm not the only one who struggles to find "spare time" to explore the blogosphere, Instagram has been soaring in popularity where as the blog doesn't see much action these days.  That, and the technology-induced ADHD that most of us are afflicted with lends itself to glancing at a small photo and 140 character caption over wading through paragraphs and paragraphs of narrative on a blog.  Am I right?!  

As fun and convenient as the Internet and social media are, they are not without pitfalls.  As many of you know, while our family does maintain a public profile and while we happily allow strangers to access our blog/Instagram account with the hopes that our story will help educate people about Down syndrome and shape a more welcoming and inclusive future for individuals with special needs, we try to follow basic Internet safety protocol.  There's no telling who is accessing this information.  I suspect the vast majority of people who stumble upon our blog and Instagram accounts are tax-paying, law-abiding, upstanding members of society.  But just in case, we guard our personal information closely.  We do not reveal our last name nor do we reveal where we live.  And even though we live in the social media "public eye," we are private about certain aspects of our lives.  

No, I will not tell you who I voted for in the presidential election.  

And things have been working out pretty well for us until recently.  Our Instagram account, @CatfishWithKetchup, was suddenly inundated with hundreds upon hundreds of new followers.  Many of the profiles contained content of a questionable nature.  I am not opposed to blocking an account if it is inappropriate, but they were coming in way too fast for me to block.  I literally do not have the time to check each profile.  After researching Instagram "spam," I realized that many of these accounts are designed to leave comments on my feed that are lewd or that encourage our followers to click on a link that will connect them to sketchy websites.  We have young children following our Instagram feed.  I am not okay with our profile being used to distribute inappropriate propaganda.  

So @CatfishWithKetchup is private for the time being.  

This post is designed to address the feedback I've received and to explain to those who are disappointed why this decision had to be made.  For those who have requested to follow, I will approve those requests as soon as I can, but realize I have to wade through a lot of questionable profiles in the mix.  Instagram was never intended to be a platform to promote and grow our "brand" or any sort of promotional tool.  It's just a place where one mom is storing her memories.  I'm happy to let other people access snippets of our lives if it helps make the world a more compassionate and receptive place for my children.  But we're not in the business of collecting followers; especially not if that comes with a price that harms others.  My foremost responsibility is to protect my children.  

Your patience and understanding while we sort through these challenges is greatly appreciated.  

Elizabeth