DS SuperMom's Coffee scrapbook pages

 At our Down Syndrome SuperMom's Coffee the other day, we were asked to bring photos to create a page for our group scrapbook.  What a FUUNN idea!!  Thanks Casie for making this happen!
This book will be nice to have around for new mom's who join our "extra chromosome" club.  They can flip through our homemade creation and get to see our little ones  :-)  It will also be nice to showcase this book at next year's Buddy Walk.  
Casie took some pics and posted them to her blog, I hope she doesn't mind if I "borrow" a few to post on mine.  I just LOVE the Mom's in our group, we are a great support system for each other.  Most of all I LOVE their special kiddos  :-)  Here are a few of them!

I hope the mom's who could not make our "scrapbook making" coffee still make a page to contribute to the book...cant wait to see more additions!!

Me and Roberta....and that's Andrew holding little Kenlie's hand  :-)

Andrew, who is 27, came with his mom.  It was SOO nice to meet this very polite, good looking and intelligent young man.  He has a great job at Walmart and loves playing sports.  Here he shows us a couple medals of which he is very proud of.  Special Olympic Bowling and Floor Hockey medals.  He competed in this summer's USA National games on Nebraska's Flag Football team.  He has traveled to many other far away places to compete Nationally.  Very COOL!  How inspiring it was to talk with him.  I enjoyed our conversation very much  :-)

hard at work on their scrapbook pages.

***

Happy Valentines Day to you all!!
I need to get going as a Heart-shaped pizza is calling my name...then it's off to V-Ball.
***

Quick Macy update...the girl is EVERYWHERE and ALLL OVER the place.  She is one fast little booger.  Scootin', crawlin', rollin', climbing, and if you hold her hands...RUNNING!!  She is going to skip right past the walking stage I'm quite certain.  She is just in too much of a hurry to mess with slow paced walking.  Running will be her most preferred means of transportation.

haha!

She needs to be quick to keep up with her big sis...or perhaps I should rephrase that...she needs to be quick to escape her sometimes.too.loving.and.overly.aggressive big sis.

Pics and video to come later  :-)

Uh oh! Time to drop the crib...

When I went in to bring Macy down from her morning nap...this is what I WALKED INTO!

The little peanut is sitting up and dangling her limbs outside the crib rails.  ALL BY HERSELF!

haha

SOOO Funny.  

She has been sitting up for quite sometime, but has not gathered enough confidence to get herself into this predicament....at least not from what I've seen.  Who knows actually?  Sometimes she'll make sounds & chatter in the middle of the night, but hey, if she's not crying, I'm not getting my lazy butt outta bed to peek on her.  she's FINE!

(I of course had to run back downstairs real quick to get the camera so that the moment could be captured appropriately)

 

btw - do you like the piggies?  It's her new look  :-)

 She was having SOO much fun...so we hung out and had a chat before going back downstairs.

 What a goober.

 I suppose one (or two) pics who have sufficed and got the point across just the same...but you tell me...which one or eight would you recommend I cut?!?! 

 That's what I thought.

Valentine's Day photos

Poor Little Miss Macy has been feeling under the weather the last five days.  :-(  Her nose and eyes were draining like facuets and she sported quite a fever.  It just breaks my heart to see her this way.  So, needless to say we laid pretty low for a few days.  We even had to cancel our Saturday afternoon playdate we had scheduled with the Huber's.  BUMMER!! 
Yesterday, she arose from her slumber perky and bright-eyed.  YES!  An end (hopefully) to this yucky cold is near!
We decided it would be okay to go to church.  Afterwards we hit up the local Eagles Club for breakfast in support of a little league baseball team, then went on our usual Sunday Drive.
We had a couple hours of "free-time" between our drive and the Super Bowl Party, so I decided it would be fun to have a little impromptu photoshoot in the family room.
Afterall, Macy's eyes are finally back to their "bright-eyed" normal selves, both girls happened to be wearing RED and the sun is "somewhat" shining.  All these factors combined equals "good" photoshoot conditions!   :-)
Here are our 2011 Valentine Pics!

 We had some fun with "doodles".

 CUPID!!!!

Macy LOVES cheesing-it-up for the camera...she's got her "Diva smile" ready to go any given day...I, do NOT, however plan on McKenzie cooperating when I want to take pics "posed" pics.  I suppose she's a typical three year old huh?  But for some reason, she wanted to join in the fun this time...

As you can see...Macy is NOT happy about this.

"I work alone" she tells Kenzie"!

"Step aside Lady"..."This is MYYY photoshoot!"

McKenzie was even being so sweet and gentle.  But Macy was NOT having it.

"okay, okay Mom.  I will cooperate...but do not expect me to smile if I have to "share" the spotlight with my big sister".  :-(

Awwww...Thank you McKenzie for being such a sweetie to your baby sister  :-)

"okay...back to ME" Macy says.   

I am super excited to share the news that Macy officially CRAWLED the other day!  She will go 3 or 4 good fundamental "strides"...then fall to her tummy...and do 3 or 4 more.  She's one persistent little go-getter.   She is getting quicker and quicker each and every day!!!

her favorite game...and what do you know?  This little dress (thanks Cousin Anna) is the PERFECT "Peek-a-boo" dress  :-)

such the "big girl".

 Phun with Photoshop

Why...hello princess.

McKenzie trying the "cupid" wings on for size  :-)

Macy's about to make her move.  She LOVES knocking down towers!

"I'm somebody SPECIAL":  Thought this would be a good one to end on  :-)
 ****************
Happy Early Valentine's Day everyone!!!!

I have to go on and git to Volleyball.  We've got a title to defend!

:-)

Creating a Long Term Vision

I've had a few "DS Super Mom" friends ask how the conference was, what we learned and who we saw, etc...
So here's my attempt to recap (without having to go "into it" over & over again) :-)  These will be simple, brief overviews of what I learned in each session...I am more than happy to discuss with anyone should they have questions or would like more info, etc...
While at the Down Syndrome Conference we attended 3 breakout sessions.

The first (1 of 3) was "Creating a Long Term Vision for Your Child with Down Syndrome".
Presented by Bridget Murphy - DSG Board President.
As Young Professionals, both Joe and myself are very aware of how important setting short term and long term goals are.  We have set (and re-set) many as it pertains to education and professional advancement, etc.  As a marketing/Ad/PR professional I have assisted several clients, across many industries, in establishing goals and objectives.  Creating and abiding by Mission Statements and the like.  But never have I thought it important to create a FORMAL long term vision for my child.
Fortune 500 Companies have Mission Statements...Non-Profit Organizations have Mission Statements...Why not your family??

Why create a vision? 
*  Gives you Direction  (keeps you and your child on the right track)
*  Holds you Accountable  (some people, once a "mission statement" is created actually print it out, frame it and display it on a wall in their home, to serve as a constant reminder of what they have PLANNED and work towards each and every day - not a bad idea)
*  Lessens anxiety  (while setting and working toward achieving each and every goal set by you as parents, therapists, educators, doctors, etc can seem extremely overwhelming...keeping your eye on the BIG PICTURE and END-GOAL could simplify the process and lessen the anxiety of it all)
*  Creates a Successful Outcome  (In business, sports and of course Life, one should always visualize a victory.  "Shoot for the Moon and if you miss at least you'll still be among the Stars"...I am also reminded of the Special Olympics quote "Let me Win - But if I can not win, let me be brave in the attempt" and "Failure isn't in not reaching a goal, but in not having a goal to reach".

What WAS Your Dream?
Mrs. Murphy also asked the attendees to share what their dreams were.  Their dreams before this diagnosis of Down Syndrome was in their lives.  For you as a person, as a parent and as a family.
I personally reflected on how my dreams as a "working mother" had changed, or should I say had been derailed slightly.  While I have put my "professional" dreams on hold for a while, I still have them.  Right now they are tucked far back in my mind, but they're still there.  And I truly feel, that some day (perhaps soon) I WILL re-set out to achieve those dreams.  And who knows, perhaps Down Syndrome will prove to be a part of my new dream...I believe it almost certainly will).  We shall see what the future has in store.
I also reflected on my dreams as a parent.  I have undoubtedly learned to be a better, more loving, more compassionate and more PRESENT mother.  I feel as though I am more capable of loving my children unconditionally.  To be perfectly honest - MUCH more "unconditional" than prior to learning of Macy's special "differences".   :-)


So.  Right then and there.  Joe and I put our heads together (pencils in hand) and brainstormed with each other.  Where do we see ourselves in 20 years?  Where do we see McKenzie in 20 years?  Where do we see Macy?  How will WE get there?  Our goal is to get there with the help of family, friends, neighbors, classmates, educators, therapists, doctors, etc...with dignity and maintaining self respect.

Below are some bullet point goals for our young Adult "not-so-Little Miss Macy" (at 21 years of age):
*  Be Happy
*  Socially Active - have a close-knit group of friends
*  Satisfying and gainfully employed
*  Involved in the community  (goes hand-in-hand with being "a contributing member of society")
*  Family focused
*  Independent/self sufficient with every day tasks
*  Transitioning into a Post-Secondary Education
*  Polite and Courteous
*  Be Respectful and have Integrity
*  Fiscally responsible & financially aware
*  Goal Oriented
*  Possess appropriate behavior and good overall hygiene
*  Have strong Christian core values and principles

While these goals were set specifically with Macy in mind, we certainly hope for McKenzie, as well as any other children we may have, to achieve these same PERSONAL LIFE goals.

*  Final goal - for me and Joe - OUR marriage and Life come first.  We will try so hard not to lose sight of this.  Easier said than done some days...as I know many can relate...but we must at least keep this top of mind!

Let this serve as a road map to a better & brighter tomorrow for the Harnisch Family!  we reserve the right to tweak and revise as the years go by, but this gives us a good solid foundation from which to build from.  
So each day, as we set out to conquer small, seemingly tedious objectives and put forth plans and strategies, (specifically with teachers, IFSP/Early Intervention teams, etc) let us reference these "END-GOALS".  Let us ask ourselves "how is this going to get us to our "End-Goals"?  Is it helping us or hindering us?  We may need to re-think some strategies along the way to remain TRUE to our BIG PLANS/FINAL GOALS.  "Sounds like Life to Me"



*****************************
In conclusion - now that we've defined specific values and goals - here is our family Mission Statement.  (subject to major revision - as we were very much under a time crunch at the conference)

The Mission of our Family is to have a Strong Marriage Based on Trust, Faith and Love, with Independent, Respectful and Contributing Children, with a Strong Support System of Family and Friends Helping Us Achieve Our Worthwhile Purposes.

Tomorrow (or soon at least) I will follow up with the other two breakout session topics:  

"Technology on the Horizon" and "PLAY Your Way to Better Language Learning". 

Down Syndrome Guild of greater Kansas City - Forecasting the Future conference

This past weekend, Joe and I had the pleasure of attending a Down Syndrome Conference (Forecasting the Future) in Overland Park, KS.  A special thanks to my sister Lisa and Joe's parents for watching the girls so that we could get away for a couple days.

There were a few other people from Omaha who attended the conference as well, so it was nice connecting and catching up with them, as well as meeting many other people from the 5 state area.
The three morning keynote speakers were great!  I enjoyed hearing and learning from each of them.  The first speaker was a mother to a grown man with Down Syndrome - she is a very active leader in the National Down Syndrome community.  It was inspiring and uplifting to hear her (and her son's) amazing journey.  He's a COLLEGE GRADUATE!!  She is certainly (and rightfully so) one proud mamma.
The third speaker, George Capone, was a Neurologist.  He was very interesting and shared the latest updates, as it relates to research, genetics, mental health functions, sleep studies, behaviors, etc.  (I did not take notes, so it is difficult for me to recap his talk - but it was insightful).
The second speaker was my MOST favorite.  A gentleman by the name of Michael Cardella spoke to us next.  He is 30 and has Down Syndrome


*****
(I pulled this bio from the national Down Syndrome Congress site - I think it describes him best)
Michael Cardella is a dually Certified Toastmaster and the Sergeant-at-Arms of Thorobred Toastmasters in Saratoga Springs, NY. He is a member of the Self Advocacy Association of NYS Speakers Bureau, representing self- advocates with disabilities across New York State, and is an alumnus of AmeriCorps*VISTA (Volunteers in Service to America).
Michael was a 1998 graduate of Schuylerville High School receiving an IEP diploma. He was always educated with, and graduated with his nondisabled peers.


An avid self-advocate, Michael is also a graduate of Partners in Policymaking, and was chosen to represent NY State in Project Leadership in Washington, DC, a project of national significance for advocates and self-advocates across the Nation.


Michael has done keynotes, workshops and presentations at numerous conferences, statewide and national groups, and has done keynotes in New York, Washington, DC, and as far away as Guatemala and the Bahamas. He is a frequent presenter at the NDSC Conferences, including doing “Maki with Michael,” his sushi workshop for self advocates. His personality and unique sense of humor comes through in his speaking, gripping audiences everywhere.


Additionally, Michael has been competitively employed in his community since graduation. He is currently an employee of both Applebee’s (for 9 + years) and Hannaford (for 3+ years). His choice has been to continue working part-time because he insists, “I don’t want work to interfere with my life.” Michael truly has a great life, and he will share that in his presentation.
****
It was so incredibly inspiring to watch this young man stand up on that stage, full of confidence, before a crowd 250+ people.  He delivered an eloquent, personal, and humorous presentation.  It was ALL about HIM.  He used Power Point to share photos and to keep him on track.  It was awesome to meet him and hear his story.  Most importantly, it was AWESOME to hear HIS story told by HIM!
A line he kept referring back to throughout his speech was (and he made the entire audience say it with him): "God don't make Junk".  He was also quite proud to show several pictures displaying his photo on the big screen in Times Square.  Quite the celebrity!  Oh and he's best friends with Chris Burke (Life Goes On star).  hehe

Certainly gives me (someone who is still very new to this whole Down Syndrome world) an optimistic glimpse into tomorrow.
Here's to hoping our sweet Little Miss Macy is as intelligent, well-spoken, poised, calm, cool and collected as this bright young man.  I believe she WILL be.
:-)

Grandpa Feeding therapy

Macy's favorite therapist (Grandpa Lee) braved the icy conditions and stopped in for an impromptu visit yesterday.  His timing is always impeccable...right when Macy is hungry and ready to eat.  This is no coincidence, I'm pretty sure he plans this.  So of course, by all means, feed the kid!  :-)

I pride myself on being a "clean feeder".  Reward to me, is finishing a Macy feeding session and being able to reuse the bib, and not have to soak the highchair tray.  Macy has become such a good, clean eater.  I just LOVE IT!  

But, this is not exactly how Grandpa Lee rolls.  He would prefer she go ALL in.  And by all in, I mean, hands, nose, ears, cheeks, feet and if she's lucky, she gets a little food in her mouth.  Toby stands by (under the highchair) and wait patiently for his droppings. 

Watching makes me cringe, so I tend to keep my distance.  I mean COME ON!!  At LEAST make an ounce of effort to KEEP it in her mouth.  Every time, he is "mid-feed" and I immediately regret not stripping her down first.  It's too late now, make note for next time...

I have heard that allowing them to get messy and feel the various textures on their face and hands is actually good for them.  Stimulates their senses, reminds them that their cheeks are there, etc...okay, I get it.  I am not the best at allowing this (it gives me anxiety), so I am glad that Grandpa Lee comes over to expose her to this "Messy Sensory Therapy".

 Black & White, while cute, just doesn't serve the "mess" justice...

GREEN BEANS!!

I must give my dad some credit...she sure IS having a GREAT time  :-)

Showing off her two new "teefers".  :-)
2 down...18 more to go!

 And check this out!  After a while, he got her to feed herself.  After a few minutes of teasing & dangling the spoon in front of her face (again, I chose to stay out of it and keep my distance), she finally GRABBED the spoon and shoved it in her little pie-whole.  You go girl!
My little "self-feeder".

 Oops.  You missed.  again.

Bullseye!

"Here Gwampa, you try"

 What. A. Mess!

Macy signs 'ALL DONE".

Congratulations Kid.  Today's performance grants you a trip across the kitchen, where you will be immediately stripped down and bathed in the sink.  If only it were summer, this would be much simpler.  Taking her out back and hosing her down (fully clothed) would have been much more effective.

**

Thanks Dad!!!!

Now if only we could get her to be as excited about drinking milk from a sippy cup as she is about eating solids from a bowl.  :-(