Princess Ky Background - The cutest blog on the block

Friday, January 21, 2011

The Happiest Place on Earth

My family LOVES Disney.  We love Disney movies, Disney toys, and the Disney Parks.  Though Dan and I have been there 3 times and absolutely LOVE it, Kylie, at the mature age of 4, has yet to experience the "Mouse House".  It will be a dream come true when we can finally take her and introduce her to "The Happiest Place On Earth".

I recently realized, however, that our family may have too much Disney exposure... How do I know this?  At dinner, my daughter picked up her fork and (to my shock) began to brush her hair with it.  My husband, who was sitting next to her, looked at her and said "Kylie!  No!  That is NOT a dingle hopper!"  My jaw dropped to my chest.  I couldn't believe my daughter was grooming herself with a dinner utensil and I didn't realize my Prince Charming knew what a "dingle hopper" was!  Evidently, he and Kylie have watched The Little Mermaid a "few" times together!  ha! ha!

I also realized we might have an issue when Kylie asked if we were going bye bye "in the carriage"... Ok. So my girl has a few little "princess dreams" (hmm... wonder who she gets THAT from?)

Kylie and I love "bling", sparkles and glitter.  If it can be embellished, we love it all the more!  While I don't care much for dressing up myself, I sure love to dress up Kylie (and she loves it too!).  We love books like Fancy Nancy and Tea for Ruby.  We pretend we have tea parties and we dress up all the Barbies in their finest dresses.  We love hair bows and sparkly accessories - there is no such thing as too much!

This winter Kylie has struggled with chapped lips so to treat this malady, Kylie will put on "princess lipstick" (good ole' Vaseline or Chapstick) instead of "medicine".  It works every time!!

I have learned through parenting Kylie that being successful has everything to do with the method I use and HOW I present the idea.  The thought then becomes hers and it is much easier to motivate her by sparking the idea than by commanding/demanding obedience. 

Children with Autism can be very rigid and strict in the way they function on a daily basis.  Things have to be "in order" according to their own personal organization system.  For some, that means things will be categorized by shape, for others, it might be by size.  For Kylie, most things are arranged in the order of the colors of the rainbow.  Give her markers and she will line them up in this order: red, orange, yellow, green, blue, purple.  She will even color a picture in that very order. 

Sometimes it is important to work with these little ones to teach them flexibility (especially if it is a safety issue) but other times it simply doesn't matter.  So what if they wear their footy pajamas to therapy - they probably hate feeling cold when it's time to get dressed.  Does it really matter if they wear snow boots to church? They probably love hearing the clomp, clomp, clomp and enjoy feeling cozy on such cold days.

I recently had a friend share with me her frustration that her 2 little boys insisted on spitting on each other on the way to school.  No matter how much she scolded in the front seat, they continued to share their saliva with each other.  Reaching in my bag of creative parenting tricks, I suggested that the next day, she should hand them the frilliest, pinkest, baby bibs she could find and explain to them that she worked really hard to ensure they look nice for school.  If they insist on behaving like babies, then they need to protect their school clothes by wearing bibs on the way to school.  She would then hand each of them a baby bottle of milk and a box of animal cookies.  My guess is that they would probably be embarrassed by the bibs and think it was fun to drink out of the baby bottle and eat the cookies. 

While the discipline seems "fun",  the message/lesson would be driven home in a way they can relate to! (and a memory would be made).  Who wants to spit when you can eat breakfast/cookies? 

Some will say that this method is "rewarding the poor behavior".  In my opinion, you did the opposite.. you achieved your goal and purpose... no more spitting in the car.  (and everyone is still civil to one another - no yelling first thing in the morning).  The children are too occupied to resort to the behavior that results from being bored.

A few days ago, my own daughter got herself into a pickle when she decided to finger paint with an entire jar of Desitin diaper rash cream.  If you aren't aware already, that cream is absolutely water proof and very difficult to remove (which is why it is the BEST).  She had rubbed it all over a TV tray and when the feel and smell started to bother her, she tried to wipe her hands on her fleece shirt and jeans.  The stuff was so thick that the clothing did very little to remove it, so she proceeded to wipe her hands all over our leather sectional sofa.  She then tried to shake it off and was successful in distributing polka dots all over our living room carpet and walls.

My husband walked in and found the mess.  We had no right to scold her as it was we who had left the jar of cream where she could get to it.  She was acting on her developmental age (as a toddler) and was exploring in the appropriate way that toddlers explore.  Upon further reflection, we realized that she was trying to recreate a therapy session where she was allowed to play in shaving cream.  Both substances were white but that was the end of the similarities. After taking a few pics (bribe and extortion pics for when she is a teenager), we proceeded to clean up the mess (of course, having her help). 

Kylie also had an encounter with a salt shaker recently.  We found her shake, shake, shaking a salt shaker all over the very same TV tray.  It was interesting to observe, as she was thoroughly enjoying the sound.  (again, WE had left the salt shaker in a place it didn't belong)

Now, some parents may become livid over these antics, but to my husband and I, we find this behavior fascinating.  Our daughter has never played in a typical fashion so it has been important for us to learn about "her" - not just about most kids her age, but about "her".  We have had to learn about our unique daughter and observing these behaviors has given us a window into what her needs are.

The Desitin taught us that she craves tactile sensory stimulation.  The salt episode taught us that she enjoys (and was soothed by) high pitched quiet sounds.  This information is a gold mine when trying to work with and meet Kylie's unique special needs.

It is so important to learn who your child is, what motivates them, what provokes them, what their fears are, and what their sensory needs are.  They are not the kid next door, they are not you, they are not a sibling.  They are their own unique self.  Unlocking the informational keys to helping our children and meeting their needs is such a vital responsibility of both typical and special needs parents. 

Our children are not trying to "play us" - they are attempting to communicate with us.  The question is... Are we listening?  Are we hearing? or are their attempts at communication being drowned out by our own busy schedules and inappropriate demands of their maturity level?

Of course, I believe in boundaries and appropriate rules.  What I don't advocate is yelling the roof off the house and belittling children for things that are developmentally appropriate.

While ornery at times (and I readily photograph and share those moments) my daughter is a jewel!  We love learning about her and her developing personality.  She is unique and special and deserves to have the best of her parents.  The left overs are not good enough for this princess.  While our parenting style is unique, I will also share that Kylie is very well behaved.  It would crush her if we ever raised our voice with her. We cherish our girl and choose to parent her in the same manner in which our Heavenly Father parents us.   

I encourage you to ENJOY your little one's childhood.  Find teachable moments.  Be patient with your child and realize that not every offense demands punishment.  Sometimes the natural consequences of an offense are punishment enough.  Contrary to what most people believe, discipline is not the same as punishment... Discipline is the method of teaching, training and coming alongside your child.

Get to know your child in this manner.  Partner with them to learn and grow and discover the world around them and you will - indeed find- the many facets of your unique child and in the process discover ...The Happiest Place on Earth.

P.S.  Feel free to share creative parenting techniques that you have employed to teach a lesson or used to motivate your child to action.

P.P.S  Interested in reading an opinion that completely differs from mine?  check this out...

I have "thick skin" but please be kind to me in your responses....  =0)

Wednesday, January 19, 2011

Embracing the Mystery

Kylie: In her best "Pharoah Pose"
... notice the orange nose? She'd had a lunch of carrots... YUM!

Every one of us has a unique and personal story.  A story that no one else could even begin to tell.  Each story has fingerprints, tear stains, belly laughter and the scars of all it took to learn the lessons we were supposed to learn.

When we are "in" the development of the story, it is hard to see the conclusion, the wisdom... we are simply trying to tread water, to breathe, to keep it all together...

But, later... later, when it is quiet all around you and life is still... when you think back and ponder on all that took place, you can't help but wonder... Did I do well?  Did I reflect my values? Did I make good decisions? How did others view my actions? I wish I could have done this differently or I wish I had said that instead...Was I a warrior for the weak? Did I defend the rights of those who couldn't? Did I make hard choices? Did I walk the road of loneliness because it was the right thing to do?

I find myself thinking a lot these days... I sometimes wonder how I got here... right here... In all my dreams and planning and pursuing... I never would have imagined that a big chunk of my future would lie in the world of special needs and autism. 

I often ask God... "Why did you choose ME? I feel so tired and ill equipped to handle this and God there must be people who would do BETTER- who have it all together"...

I recently came across a paragraph in a book I was reading (about being thankful) that really caused me to look at my life and my choices differently.  The author talked about how the Israelites were given manna when they were traveling in the desert after escaping from Pharoah (this account is found in the Bible as well- Exodus 16).  I decided to do a little research on manna and the events that transpired around its introduction.   

In the book of Exodus, we learn about this group of people who live under terrible persecution by Pharoah of Egypt.  They were God's chosen people and Pharoah was so worried about losing his kingdom (one of the largest and most beautiful in the land) that he decided to impose even harder labor and population control to be sure that these poor slaves would not overpower his people simply because they were larger in numbers.

Pharoah ordered that all Israelite boy babies be killed at birth.  The midwives managed to foil Pharoah by making up a lie about the women giving birth before they could arrive to kill the babies.  Pharoah, not being able to trust the midwives, commanded that the means of death would be to throw the tiny babies in the Nile River.

As a woman who waited 13 agonizing years to be a mommy, I cannot even fathom what that must have been like for the women of Israel.  To feel those babies kick and hiccup for 9 months and then gaze on their precious faces for a few seconds before having the baby ripped from them and thrown into the drowning river Nile.  The more clever women might have been able to hide their wee boys for a few months but in the end... their heart would be torn and the ache would be much deeper than the bloody waters of the great and awful Nile.

I give you this history because it is this same people group who later find themselves rescued from the grip of Pharoah only to be out in an open desert with no food and no water.  They are being called upon to trust in a way that they have never had to trust before.  I see the families with small children...every evening the wee ones crying for just a little drink and the mamas with an ache in their belly knowing they cannot provide what isn't there.  First they watch their baby boys die and now, it seems these children will also die... can they bear any more???

And then... God steps in and provides water - not just water but sweet water.  And then he provides manna.   The word manna literally means "mystery" or "what is it?".  This manna was an unknown substance.  They had never seen anything like it, had never experienced its taste or texture... They didn't know what nutritional value it had ...

The Israelites had a choice to make... they were being asked to embrace the unknown, to eat a material that had never been tested in their animals let alone in humans.  They were being asked to rely on a miracle to have their daily needs met.  They could not grow it or harvest it... it was just ..there...and  it was from...Him.

The Bible calls it "corn from heaven" or "bread from heaven".  It wasn't the cheap bread from Aldi or the expensive stuff from Panera... It was from ...Heaven.  They take the plunge and decide to trust and then they slowly put this manna to their lips- they inhale the scent of what smells so pleasant- and then they take a nibble.... they decide to put one foot in front of the other and ...try.  Try the very thing that God has provided to maintain their life flow...

As frightened as they might have been... they made a choice... they picked up what had been given them, they gathered it up and they embraced it by savoring it.... and they found it SWEET and they found it GOOD and most surprising....they found themselves Fulfilled.  They feasted on manna for 40 years!!

As I researched and studied this so common story... I really thought about my "manna"- my life place- my presence in the world of special needs and autism.

I remember when we first received Kylie's diagnosis...  I can still see myself sitting in that clinic office just holding my breath hoping they would tell us she was a savant.  That her unusual play skills only meant she was brilliant - a prodigy.  I knew the alternative was the "A-word".  I refused to allow myself to go down that road.  I wasn't ready for that...

Soon enough we learned the truth.  I remembered leaving the doctors office feeling frantic - my daughter was healthy, but how was I going to give her what she needed??? I knew NOTHING about autism.  I didn't even know anyone who had experienced this... none of my friends who had babies before me... I needed information and I needed it NOW.

Was this the same frantic need that Israelite mamas felt when they needed food and water NOW for their children? Did they look at that expanse of sandy desert and feel as lost and unprepared as I did when I looked at the word autism on paper?  When their future was unclear did they feel like I do as I imagine what Kylie's future will be? (and dare I admit it... what MY future will be?)

Did I view my "manna" as the gift that it was?  My girl wasn't just a girl from a hospital... she was gifted to me by loving birth parents and ....she is the "corn of heaven"...

God laid out an elaborate plan for her to be entrusted to me. That wasn't an "off the cuff" decision... He planned it...He timed it... perfectly?

Really God? Is this why you had me wait 13 years to know the desire of my heart? Was this planned too?

And then I realize... I just called my life (with an adorable little girl who experiences autism) the "desire of my heart"... It flew by so fast, I almost missed it...

I want to mirror the bravery that was exemplified before me by the Israelite mamas when they made the choice to embrace the mystery- the unknown- a road less traveled- an unfamiliar territory, a future that isn't spelled out.  Maybe I will have days when I complain as they did and grieve the One who provided such a lovely gift in the first place- I hope I don't.  I hope I learn my lesson quickly.

I hope that our lives will be an encouragement to others.  That we will be brave and true to what we know and believe about the One who provides everything for us... doctors, treatment, finances... the One who goes before us with family and friends... the One who directs us when we are advocating for our girl in the government, with insurance companies, in our churches, communities and in our schools...

I hope that people will see our transparency when we are tired and need to rest in Him, when we feel we are not equipped and run to His Word, when we feel alone and need His arms around us, when we feel exposed and vulnerable and need to reach out and ask him for help.

I hope that my readers will know what it is to have Jesus be your provider... the one who goes before you... the one who protects your child and perfectly plans your life.  He CAN be trusted.  He WILL prove Himself. 

And may this blog be my "omer" - the piece of the story that I keep and treasure to share with Kylie one day.  That God planned her.  That everyone has struggles but that He will help her.  That He gave us to each other.  Sometimes we do hard things so we can share our story and glorify God.  The multiple stories of how we have advocated and won, how she tried her hardest and improved. 

Most of all, "embracing the mystery" means that you don't have to walk alone.  It means you join a family of like-minded people who have also taken that step of faith and trusted in HIM for deliverance, peace and the knowledge that He will always be with us. 

Because of HIS presence, we are able to withstand the reality of a world of Autism and Special Needs- even if we don't know exactly what lies ahead.  We can accept the unknown in confidence because it is HE that goes before us and He has a perfect plan for every life he created.

"And the mystery,
that which made no sense,
'like wafers of honey' on the lips" 
(Ann Voskamp, author of One Thousand Gifts)

"The Lord will fight for you;
you need only to be still."
Exodus 14:14

One of our first family Pictures:
Doesn't Kylie look happy?
So GLAD we "Embraced the Mystery"

Friday, January 14, 2011

My Little Stinker

Recently, I did a little unofficial poll among my facebook friends and family.  The question I asked was this...

I know this is a VERY strange question, but in your house, how does your family refer to (or what words do you say) to talk about a "fart"/ "passing gas"...  (I know it is such a taboo topic, but I really want to know)

Can you believe that I received more responses to this question than I have ever received to any other status update I have posted?  It was no surprise to me, but might be to some of my more prudish readers, that... sit down... it seems EVERYONE does this!!

The thing I love is that every family has their own way of handling this body function. The "horror" of all bodily functions actually creates a bonding experience and community for each cluster of people.

The responses were so interesting...

*For some, the word "fart" is the equivalent of the "F-word" (the OTHER F-word) and to utter the word was/is a major offense in some families and schools- spankings occurred, papers had to be written and children were expelled... oh my!!

*Some alternate words/phrasing (used in the families of my friends) are as follows:
  • Toot/tweet
  • Bottom burps
  • Ducks quacking
  • In one family, girls: fluffy and boys: cut muffins
  • Spuff
  • Pull my finger
  • Blint
  • Air bender
  • Gas
  • Stinky Poo
  • Burp
  • Air Duce
  • Rooty-toot
  • Russian word meaning "a cute little farting doll"
  • Cut the cheese
  • Harvey 
  • Stinker
  • Poot
  • Who did "It" 
  • Punky
  • Fluffed
  • Whiffle
 *I found it hilarious that a common denominator in all of the families was that everyone always wants to know "WHO" did it!

So, what has occurred in my life that prompted me to ask such a question on such a hush-hush topic? 

You see, I have a daughter that experiences Autism.  Specifically, PDD:NOS (Pervasive Developmental Disorder Not Otherwise Specified).  One of the major medical issues of children and adults with Autism is severe bowel issues.  The majority of them suffer from horrible constipation.

I know this is an uncomfortable topic for many, but if you want to understand our family better and in the process gain knowledge about Autism, here is your chance... I'm chatting no holds barred!  For those of you concerned that my daughter will be scarred for life when she reads this someday, fear not.  I intend to train my daughter that sometimes we do hard things in order to make a difference in the lives of others.

Be sure to read this post in its entirety as there are a few funny stories I'll put at the end (related to the topic of course) - a reward for your toil.

The constipation in these children is so severe that they often prostrate themselves on furniture to relieve pain.  Their little bellies become really distended and their intestines stretch to accommodate the foreign substance.  It causes major problems and is very difficult to toilet train the children.

Often times the problem causes reflux and vomiting. The family tends to become home-bound because both "ends" are affected and it is difficult to manage in public.  This is one of the many reasons that families who experience autism can feel so isolated!

Much of the conversation in our home revolves around the bowels- tracking, observation, medicating and etc. The treatment usually requires Miralax therapy, mineral oil, diaper rash cream and other common remedies...

When Kylie is on Miralax, it takes several days to "kick in" and then she will have loosened bowels (never formed) for many days until we have to stop the process because her poor skin can't take any more.  It is a miserable thing to endure...

When she is not medicated, the refuse is about the size of a baseball and sometimes larger and as hard as a rock.  I honestly don't know how her body is not torn in two.

The other day, Kylie's diaper kept making "noises" and we kept asking her "Are you poopy?".... she never answers but we want her to recognize what it is she is doing.  As a result, she became very familiar with this lingo.

 A few days later, I bent over to do something and my jeans "made a noise" (I can't believe I am sharing this- but it happens to the best of us right??) and Kylie, quick as a wink, said "Mommy!  Are you poopy?"

Dan and I cracked up laughing and soon began to reminisce about the first time he came to meet my family.  

My family lived in Pennsylvania at the time.  Of the 6 of us, 4 are females.  My family loves to play games so we settled down for a rousing game of Pictionary. The first word that Dan pulled from the deck and had to draw was "bikini".  Here he was trying to make a good impression with my mom and sisters and he had to draw a picture of a bikini... It was so funny!!  

Later in the game, The female sitting across from Dan leaned over the table to draw a card and in doing so "let one fly"... Dan, to diminish this person's embarrassment, quick as a wink, pointed to the sky and said "Did you see that Duck go by?" We all fell to the floor laughing... it was hilarious!!  Talk about an ice breaker!!

As I pondered these things in my heart and enjoyed a good chuckle over the memories.. I found myself thinking of these verses.

He who covers over an offense promotes love, but whoever repeats the matter separates close friends.
Prov 17:9


A man's wisdom gives him patience; it is to his glory to overlook an offense.
Prov 19:11

How thankful I am that God is a forgiving God.  That he is willing to put my offenses as far as the east is from the west.  When I confess the offense and turn from my stinky ways, He promises to never bring it up again.

Praise God for his forgiveness and mercy!

Wednesday, January 5, 2011


And by and by Christopher Robin came to an end of things, and he was silent, and he sat there, looking out over the world, just wishing it wouldn't stop.

Winnie the Pooh
The House at Pooh Corner

I stepped into the room and saw the mess: My precious girl sat on the kitchen floor in the middle of literally hundreds of scattered peanuts.  They were everywhere.  The empty jar next to her.

I looked past the peanut mosaic and saw in her beautiful baby hands, a little red bowl- the peanut lid.

Its treasure? a few little peanuts.

 "You eat this?" she asked of our 15 year old cat, Tigger.  And to her great delight, Tigger greedily ate the salty offering.

As cute as that interaction was, I admit, the mess was making this mommy feel a little bit frustrated...I hate a mess!

But then, right then, as I watched this exchange take place... a warmth wrapped itself around me.  I felt His presence, His hug, encircling me. "Don't miss this" He whispered in my ear...

 In that tiny space of time, He gifted me with a beautiful window into my daughter and I wanted to remember her just like this.

I engraved in my heart the inner beauty of my little girl, her giving spirit, her maternal instinct, her sensitive heart, her thoughtfulness of others, her creative expression...

I chose to look past the mess, to forget about the cost...

Time.  It is the sand that escapes through our fingers, through the hourglass of life.  We make castles of time only to discover that they are fragile keepsakes washed away by the life waters we tread. 

But for a moment, If we stop ..It is then we can capture the simple, the ordinary.  The smells, sounds, mundane events of a day- a moment.  A moment that we will never get back, but a precious moment that we can hold in our heart- in our mind, engrave in our memory... 

Bound together, these moments give breath when we struggle for air, they cover us in warmth when the knitted coverlet is out of reach, they squeeze us in the warm embrace of companionship- when we are really all alone. 

These moments are to be kept, to be cherished for the gifts they are.

I then observed as her daddy, knelt on the floor and tenderly helped her brush the pieces- many broken- into a pile and remove all traces of the mess she had made.

I couldn't help but be touched by his humbleness.  His willingness to lower himself to her level - to go to her in her time of - well, mess.  He could have removed her from the situation, or done the task himself, but instead he chose to guide her - to imprint a life-lesson on her tender heart. He took the time to take her by the hand and teach her how to pick up the pieces and make things new again.

Instead of feeling overwhelmed, or offended by his offer of help, she became excited about the immense task at hand - which didn't feel so large with someone beside her. Her little mouth curled up into a sweet smile and she eagerly sat at his feet, was quiet, still, and allowed him to take her hand in his and Work together toward a common goal. 

 And you should have seen the smile on her face.  That beautiful smile of accomplishment and victory.  She could do it!  She DID do it!  She will forever carry this experience in her heart and in her attache case of things she is equipped to do.

She didn't just pick up peanuts or clean up a mess.  She didn't just feed a cat.  She learned integrity, cooperation, teamwork, what it means to be humble, giving and sacrificial in her service to others. 

She learned how to pick up the pieces when they are scattered around her and she knows that, with a little bit of effort, all things can become new once again. 

Can't you just hear Kylie and Tigger sharing a giggle over this Winnie the Pooh wisdom?

"It is more fun to talk with someone who doesn't use long, difficult words
but rather short, easy words like ..."
"What about lunch?"
Winnie the Pooh
Pooh's Little Instruction Book

God has given gifts to each of you from his great variety of spiritual gifts.
Manage them well so that God's generosity can flow through you.
I Peter 4:10