The Harnisch Family

The Harnisch Family

Jan 27, 2012

All Things McKenzie!!

Since the last few posts have been a bit "Macy" heavy.  I thought I would, in an effort to keep my blog well-balanced, change up the pace a bit.
So this post, is about all things McKenzie.  While, yes, Down Syndrome plays a major role in our life, it is only one small ingredient to our story.  If nothing else, this blog is eclectic & random at best.  Some days (well most days thankfully) are UP, some days are down, some days are silly, some are serious.  But at the end of the day, this blog represents a special mix of what makes our family tick.
That teeny-tiny extra copy of her her baby sisters' third-chromosome is MICROSCOPIC.  So, proportionately, it would most certainly be our goal to keep that "minor chromosomal difference" element as microscopic in our daily dynamic as possible.  So far, that's working out quite well for us. 
Thank you blog friends for keeping up with our craziness.  :-)

Sooo.  okay.
Back to McKenzie, the precocious one.
While, it's true she has developed a bit of a pre-teen attitude, I still love and cherish her to pieces.  She can be the sweetest thing (when she wants to be).

As you may recall a few months ago, we were having major "clothing issues".  read about her clothing intervention here
I am happy to report that after about three months of "tough clothing love" we were able to bring her clothes back in her room - she earned them back with good behavior.  I'd say she most certainly learned from this experience.  She now understands that a person only needs to wear ONE set of clothes a day (not 20! and it is not okay to change every 10 minutes).  She now picks out her own clothes in the morning, is quite picky, and does not have (in my opinion) the most keen fashion sense, but hey, she's dressed and she's NOT throwing a fit about it.  So it works for me - whatever!
We still have a ways to go and most certainly experience daily "behavior struggles", so we're getting some advice & learning unique tactics at "Love & Logic" class we're taking at church.  hehe
She loves preschool (especially show & tell days) and holds her teacher, Mrs. Shipe on QUITE the pedestal.  Which makes sense I suppose because she rocks.
The other day McKenzie said something really creative, smart & witty (I forget what it was exactly).
I asked her "Why are you so smart McKenzie?....Is it because your daddy is so smart?"...
"No" She responds.
I tried again, "hmm, oh, it's because your momma is super smart huh"...
"Nope".  She replies with a precarious smile.
"Well, how is it then that you are SOOO smart".  
It's cuz my teacher is SOOO smart!" 

I thought that was really sweet.  I couldn't wait to share that bit of info. with Mrs. Shipe the next day. hehe
She also mentions her teachers daily in her prayers at the dinner table.
In other news, she still LOVES ballet, enjoys her time spent with friends at Joy's daycare, McKenzie very much looks forward to Oasis & Bethany Buddies every Thursday and Sunday school, she likes going to Kids Camp on Thursdays.  She also has a lot of fun participating during Macy's Special Olympics YAP sessions.
She most definitely loves all the special time she gets to spend with her cousins, which includes lots of parties, sleepovers, movie dates, etc...
McKenzie also LOVES playing her iPod touch (but it's usually missing, so mommy's iPhone is generally the fall back)  She is a whiz on those apps.  Of course, we download child/age appropriate games and such, but I must say, she can hold her own on adult games too!  A lot of thought, strategy & hand-eye coordination are required for these games, so I am super impressed with her skills...Her most recent conquests have been "Cut the Rope", "Angry Birds" & "Egg Punch".
below are some recent adventures - pics taken with the iPhone :)
yay Instragram iPhone app  :-)

Jan 26, 2012

2 Year IFSP - a teeny reminder of how our girl is different

We met with our AWESOME Early Intervention team last week to go over and make adjustments to our IFSP (Individual Family Service Plan) - a mere 25 page report on everything MACY.
Sharon (Speech Path), Shelli (Serives Coordinator,) Penny (PT), Renae (Special Education teacher) Valerie Jensen (School District Rep).  not pictured:  Lucy (OT)
I Love how Kenzie & Macy are blurred in the above pic...getting them to sit still for a nano-second is seriously impossible...oh well, this pic wasn't about them anyway.  hehe

Click on the following links for a quick look back at our first few official meetings.  a few weeks old     6 month IFSP     1 yr IFSP     18 month IFSP
It's funny how most kids go through life, they grow up, develop, they learn skills, etc... Most milestones are noted, but are for the most part over-looked (taken for granted even).   This, I'd say is the norm.

It's funny to think that with our Little Miss Macy NOTHING GOES UNNOTICED and most certainly not unappreciated!  Especially with Miss Sharon (her Speech pathologist documenting her EVERY move - she is a very thorough note-taker during our weekly sessions).  I have always liked to think that Down Syndrome slows things down just enough to truly appreciate each and every milestone, big & small.  Allowing us (not always observant parents) ample time to take notice, savor the moment and celebrate it appropriately before the child moves on and conquers that next challenge/obstacle. 
I'm not saying that Macy is slow...she just likes to take her time!  (As the wise Ferris Bueller once said "Life moves pretty fast, if you don't stop and look around once in a while, you could miss it".)  hehe

I have been told, warned rather, that, for us parents, it is in this season of a child with a disabilities life that could perhaps be the most difficult.  It is during these years (1-4 years) that all the typical children begin taking off and developing various skills & abilities so rapidly, effortlessly even.  While Macy rocks & is doing super well, I am certainly not blind to small differences in Macy's preschool class...of which most of her sweet classmates are POTTY-TRAINING even! (but that's another blog).  It is not that in my mind I feel as though Macy may be "falling behind".  Sure, according to her IFSP, she's right on track & doing well.  Yes, I get it.  But I am still human and can wallow around in my own self pity at times.  I'm not gonna lie, it's somewhat frustrating...Wondering how much wider this ability gap will continue to grow.  (right now, at two, hers luckily is super subtle, especially to those unsuspecting friends around us.  I think her outgoing & vivacious personality makes up for any other possible short-comings).
I know she will continue to improve, I have confidence that on the scale of most intellectually disabled individuals she will rank high and be high-functioning.  But I also know that she will never really CATCH  UP to her "typical" friends & cousins, she will always be "behind" or "delayed".  This saddens me yes, but I think eventually I will be more at peace with the idea and accept these differences as no big deal.  She IS going to grow into that person God has specifically created her to be - no matter what.  Having this faith and TRULY believing in it day in & day out is just hard some days.
Perhaps when that day comes when there are no questions, this twisted-knotted feeling in my gut ( appropriate.amount.of.stimuli, etc...) will just go away and we can breathe easier again...
okay - enough with that - so now, if you're really bored (and looking to kill time) are some EXCITING IFSP details derived from our meeting last week.
Without getting into the nitty-gritty here, we addressed and documented (in a 25+ page report no less) EVERY development in the areas of Macy's VISION, HEARING, HEALTH STATUS, COGNITIVE/THINKING SKILLS, COMMUNICATION SKILLS, SOCIAL SKILLS, BEHAVIORAL SKILLS, SELF-HELP/ADAPTIVE SKILLS, FINE MOTOR SKILLS, GROSS MOTOR SKILLS, etc.  It's quite fascinating actually to see it ALL spelled out on paper and graphed even.  Seeing where and exactly how much (on a bar chart) she has grown since last time.  Who has this much time??  Our IE team apparently.  hehe  Love them & and very much appreciate the time and attention to detail they put into Macy's future of being the best and most productive person she has the potential to be.

So now that we have addressed where she is...what does this mean?  Where do we go from here? are some simple goals we have set for her:  and YOU CAN HELP!!

Gross Motor Goals -  work to improve Macy's ability to interact and move safely within her environment by mastering the objectives below:
a) develop a true run on flat surfaces, with a brief single stance moment.
b) step up and down from a few steps safely with minimal support
c) kick a ball from standing still position (balancing on one leg to kick with the other)
d) throw a ball overhand forward 3 feet from a standing position while maintaining balance.
e) jump up, clearing her feet from the floor
f) maintain a sitting position when sliding down a short (8 foot or so) slide.
g) propel a ride on a toy forward, backward, and turning it independently.

Fine Motor Goals - Macy will participate in activities to facilitate self help/fine motor skills by mastering the objectives below:
a) Drink from a cup and/or glass with little (to eventually no) spillage
b) Bring food to her mouth using a utensil with minimal to NO spillage 
c) unfasten the zipper and remove her coat
d) undress herself removing all articles of clothing.
e) Turn the pages of a book one page at a time.
f) imitate circular, horizontal and vertical lines with a model.
g) Fit at least 5 shapes into their corresponding places without prompting.

Cognitive Thinking & Social Skills - Macy will be able to play independently with materials in constructive play, imitate daily routines, and participate in interpersonal games.  During play and routines she will be able to demonstrate understanding of verbal requests and next step language.
a) use a variety of toys in constructive play (stacking blocks, connecting large legos etc)
b) sequence several actions during functional play with objects independently.
c) follow familiar one and two step verbal directions with fewer prompts or environmental ques from family and familiar adults.
e) when adults are not near by, use gestures or verbalizes to gain the attention of another to share, show, get help or request an item.
f) engage in parallel play (mimicking the action of others)
g) find 5-7 body parts during play, finger plays or during dressing routines.
h) imitate gestures for a wider variety of interpersonal games.
i) use pictures/gestures or signs to request or initiate familiar games.

Communication Skills - Continue to expand Macy's expressive communication skills by using words/signs/pictures to effectively communicate her wants and needs and to interact with people across her natural environments.
a) engage in vocal play imitating both her sounds and novel sounds when adults initiate them.
b) use sounds (animal-environmental-exclamations), approximated/true words, and signs with/without prompting.
c) Be exposed to picture choices as an additional method to make her wants/needs known (e.g. food items, toy items, routine sequences, availability of objects/activities).
d) Put her sounds/words/signs/pictures together to form combinations.
e) Use words/signs/pictures for early social functions (greet, get help, terminate, initiate, more, etc).
f) Monitor oral sensory motor skills, speech sound production skills.
g) Other things to work on...pausing, turn-taking, making choices, determining adequate portions, etc).

So there, that's it in a nutshell (it really is helpful for me to type it all out - this "sharing" exercise actually puts it more into perspective for me). 
Next time, you want to productively "play/interact" with Macy, perhaps you could keep a few of these goals in mind.  But really at the end of the day, this is pretty basic and common sense stuff.  Perhaps we're just over-thinking it...but HEY, at least we're thinking about it right!?  :)
That said, it's important to remember that the IFSP is not about predicting Macy's progress. It's about taking steps towards what we believe she can achieve. And we believe her possibilities are endless!

The plan?  We will continue our weekly Early Intervention Home visits - with Sharon (Speech Pathologist) as her primary service provider and rotating OT, PT & Special Ed into the mix too  :-)

A win-win for all!
so here's to all of us working together - to helping our Little Miss Macy
explore the world around her

Magnify all possibilities - Take it ALL in!
Effortlessly climb that ladder towards success
bring those feet step at a can do it!
It's not scary, you just have to try.  TRUST ME!
go Macy go!
Such a big girl!  We will most certainly improve on this slide stuff once Spring rolls around  :-)

Jan 19, 2012

"How old is Macy??"

When you ask Macy this...she'll flash you her million dollar smile, fling her hand in the air, crossing two fingers and say "tszzzzzz".   (That's two in macy lingo).
Exhibit A

Exhibit B
Big sis gives her a bit of "encouragement".

Jan 18, 2012

Macy's uneventful 2-yr well-baby check

I am happy to report that her 2-yr check up with the pediatrician was uneventful - meaning there were no special issues or concerns that we felt we needed to address.  Which was very nice.  :-)
Her doc was super impressed and just as blown-away as we are with her development, skills & abilities.  She was a spit-fire on the examination table and would most certainly NOT let that ear-checker-thinga-ma-bobber come within a 2 foot radius of her head.  She is one strong cookie.  Doc was impressed with her "anticipation" skills & overall competence.  His remark came as no surprise to me.  She's smart.   She is fully aware and competent of the awkardness that having this device poking in your ear causes.  He had to work a little harder and use more effective negotiation tactics with little Miss Macy than I think he anticipated.

HA!  "Do you see what I'm dealing with here"?  I said.  It's all good  :)

So here are her stats (well kinda - I seem to have misplaced the report - surprise, surprise).
Weight - 22'9", which is in the 75th percentile on Down Syndrome Growth Chart.

Height - heavens I have NO idea!  Besides she was squirming something fierce so there's no way they got an accurate measurement anyway.  I do know she is in 10th percentile on the DS growth chart.
translation - she's a shorty...
Okay - so I don't have any "new pics" to share...but here is collage of some "somewhat" recent faves.

Oh and below is a sweet video of us waiting at the doc office.  Funny how they put you in an 8x8 room, alone for 15+ minutes and expect the little ones to behave.  Once she finally got bored with the UNCHILDPROOFED (I might add) outlets, she moved on to the curtain.  The kid had a blast twirling and peek-a-booking.  I was thinking about being a good mom (for a second) and telling her no...but she was having SOOO much fun...and I'd rather she pull down the curtain, than electrocute herself, so here ya go!  :-)
Just listen to that laugh!!!  ha.

As the background music says - she's having "THE TIME OF HER LIFE".    yes I added music, thought it would make the 1min & 35sec video a tad more entertaining.  :-)

Jan 6, 2012

A note to Macy on her 2nd Birthday

Macy, today (okay, I'm a little behind on my posts, 5 days ago) we gathered at our home to celebrate your 2nd Birthday.
Just 40 of your closest family members came over to show their love.

It is impossible for you to understand just how lucky we all are to have a front row seat to the greatest show on earth.  YOU!  You are a riot.  An absolute comedy show at times - sure you're fiesty, but you're YOU.  As Dr. Suess would probably say - You are the you-est you, you could be.  Loaded with character.  Full of energy, insatiable charisma and endless charm.  Seriously.  What's NOT to love about every inch (centimeter actually) of you?  We just thank God every day for allowing us to wake up and know that the funniest & sweetest little kiddo is waiting right down the hall.  Waiting for us to open the door to her bright pink room.  Every morning, NEVER FAILS, the moment we open that door, you bounce up, and throw out the world's biggest smile...bullseye.  You're a sharp shooter kid.  Those giggles & smiles always hit us square in the heart - I'm sure that's right where you were aiming too.  What an awesome thing to wake up to every day.  Thank.  You.  For.  THAT! 

Every day we get to spend with you brings us joy.  Joy to the trillionth degree.  Being able to watch you grow and develop into the person you were meant to be is so rewarding on too many levels to mention.  Each and every one of God's creations are amazing, but you my friend, YOU are the most amazing creation (at least to little ole me) OF ALL.  Every day you blow me away with new skills, abilities, milestones, expressions, signs, smiles, gestures, the list goes on and on.  I'm proud and elated, because I know these accomplishments don't come easy.  Sure, it takes you a little longer to learn how to do most things, and perhaps you have to work a little harder than "typical" kids, but you sure wouldn't know that by looking at you.  You handle every challenge and obstable with grace, confidence and poise.  When you want something, you just go GET IT!  Period.  You never whine or complain.  You just DO IT.  You always prevail.  You continue to be little miss social butterfly, the life of the party.  So sweet and welcoming of everyone - always looking to make friends.  :-)

You leave your daddy and I wondering.  Who are we?  Who are we to have been brought this far.  To have been trusted this much?  Who are we to have been given this awesome opportunity of being your parents?  We will thank the good Lord above for you always.  Our heavenly creator, with his very own hands, most certainly opted for the most delicate, illustrious and brilliant thread when he so intricately wove you together inside my womb.  A custom creation, a marvel from up above, for us all to enjoy & adore.

We are truly blessed to call you OURS.  We strive to make you proud.
And we genuinely hope that someday you too will feel blessed to call us YOURS. 

I'd like to think that every day we teach you something new...but that would be inaccurate...every day YOU TEACH US SOMETHING NEW!

So, okay, sorry for the ramble, I guess I tend to do that sometimes (especially when you are napping and big sister is crafting quietly simultaneously).  Below are some snapshots taken at your little B-Day party.

Aunt Jessica, Aunt Shelly & cousins Autumn & Ashlynn having a great time at the party.
Cousins Sam & Mason lookin' busy...Mason's on the phone and can not be bothered.
Macy arrived to the party ready to nap!  After a long weekend of partying at the lake and at the Witt's house.  :-)
Anna & Brook check out the caterpillar cake.
McKenzie & Cousin Ally playing with their Lallaloopsie dolls.
reading Harrison a book  :-)
Macy starting to make her rounds...from one plate to looks like Keri is her current victim.
Love those lips...her cheekies are FULL of food too.  ha!
hmmmm, where should I go next?
Grandma Harnisch brave enough to sit with the kids at the kids table  :-)
from left to right - Lisa, Dylan, Jim, Danielle, Dan, Grandma Lee & Grandpa Lee
Macy spots the next sucker who will share her food. Aunt Heather!
Macy watches her big girl cousins play house.
Mason & Sam come on over and play along too.
But Ally can't be bothered.  deep in thought & imagination.
Macy decides to come back to the family room and join in the party.
Maybe there's some food to steal over here.
I think she may have stolen this juice box from Uncle Jim....RUUUN!
Dylan reading one of our newest blog books  :-)  This blog has produced 4 "6 month increment" books, all totaling about 300 or so pages.  All a good read when we want to revisit some recent memories - I LOVE OUR BLOG BOOKS!!  :-)
Girls Club
Macy sure does love it when cousin Danielle comes around  :-)
Present time!  The grandpa's helped facilitate the craziness.
It was crazy because all of Macy's cousins wanted to be right in on the excitement as well.
Macy showing Aunt Jessica how to rock the sock money to sleep.
The big kids hogging Macy's new toys, while she reads the instructions off to the side.
Macy sneaks away and digs some old toys out of her toy box since the bog kids are all playing with her new ones. hehe
Caterpillar Cupcakes (supposed to be from the "A Very Hungry Caterpillar" theme, but I requested that they be more "girly" in color).  :-)
blow out the candles time!
She had quite an audience.
Make a Wish!
getting satisfyingly messy.
Heather, Grandma, Keri & Eirka being goofs
Macy tries on one of her new adorable little dresses she got for her Birthday

Happy 2nd Birthday Little Miss Macy...we all love you so VERY much!!!!