It's Just Jello

If you have been reading my blog for awhile...you know I love nothing better than a good quote.  I love them...I hoard them...and I just wait for the perfect time to share them.

"It's Just Jello"

Without a doubt this is my favorite quote of all time and it has served me well for some sixteen years.  It came from a most unexpected source...my seven year old daughter.

Words spoken so quietly amid the usual bedlam of a typical school morning...well maybe not completely typical...Steve was out of town and it was Halloween...which meant it was party day at school. Heavy sigh....

So with my three year old hanging on my leg begging for my attention I packed lunches, costumes, double checked backpacks and started to load everyone in the van.  The very last item on my to do list was releasing tiny little bats and ghosts from their little jello molds.

Simple right?  Nope, not for yours truly!  The delicate art of turning brightly colored liquid gelatin into cute little shapes that jiggle so delightfully has always eluded me...and this day was no different.

Jello Jigglers...the bane of my existence...had defeated me once again.

The jigglers, so carefully made the night before, sat in the warm water just a smidge too long and I watched in horror as the semi liquified gelatinous goo slipped hopelessly into the sink...along with all my hopes and dreams of presenting perfectly shaped blobs of pure sugar and artificial coloring to a group of 2nd graders.

And I started to cry.  Yup, that day it was the darn little jigglers that pushed me over the edge.

My daughter Stevi, my little girl, wise beyond her years looked at the tears rolling down my cheeks...putting her arms around my waist she said so calmly and rationally, " It's okay mommy...it's just jello."

She was obviously talking about the unidentifiable blobs that were now laying there...mocking me as they left their indelible black and orange stains on my white sink.

But what I heard in that one simple sentence was something so much more.

My wise little girl reminded me that many of the moments in our day...moments of frustration...moments of disappointment...moments of annoyance...are just like the jello that was quickly disappearing down the drain. The jello moments are nothing more than inconsequential slivers of time that are not life altering or life shattering and are not worth the anguish and distress we allow them to cause us.

As the parents of a child with special needs we have had to face many life altering moments...the kind that take our breath away...and without a doubt we can be sure that there will be many, many more, but that day my little girl reminded me how important it is to distinguish between the two.

For the past two weeks we have had both girls home...all five of us together just like we used to be...and the way I like it best.  Having them here reminds me once again how blessed Scotty has been to have these two girls in his life. Two sisters who have kept us from living a very small life...a very isolating life.  They have filled our lives with normal.  They have been Scotty's best teachers and his firmest connection to the world outside our home. They understand him.  They accept him.  They love him. And someday they will be all he has left in this world. He is a very lucky little guy.

 So for a few short weeks our house has been filled with dirty dishes EVERYWHERE, wet pool towels on the floor, magazines, books, purses, empty soda cans, computers, bras (yup) and shoes...lots of shoes laying all over the house.

It's the price we gladly pay to have these sweet and funny girls who make us laugh until we cry along with their wonderful girl smells under our roof again.  Girls who remind us every day to laugh at the "Just Jello" moments and reserve our energy for the really important moments...the moments that take our breath away.

  Children are a gift from the Lord.
      They are a reward from him. 

Psalm 127:3

Note**  In the last week I have been so blessed to have made many new friends...friends who are living the same life we are.  A life with an angel.  A life filled with many blessings and many challenges.  A life lived moment by moment...day by day.  A life much different from the rest of the world.  In future posts I hope that I will be able to share some of their stories.  I know it will enrich and give more depth to this blog beyond the words I am able to put together.  So welcome to all my new friends, I am so glad you are here.

I also thought I would highlight some past blogs. 

 Keeping with the theme this week I chose

 Moments of Impact...about those moments that take our breath away.  

If you would like to read it CLICK HERE.

Thanks for reading and feel free to share.

If you have an important point to make...

Don't try to be subtle or clever.

Use a pile driver.

Hit the point once.

Then come back and hit it again.

Then hit it a third time-a tremendous whack.

Winston Churchill

Obviously Scotty has never read or heard this quote from Winston Churchill...But like Churchill he firmly believes this pile driving philosophy.  Scotty takes it far beyond a mere tremendous whack and into a zone that could easily be adopted by our military as a form of mental torture.  He is relentless.

A few weeks ago I wrote a post titled These are the Signs of our Lives.  It described all the different ways that Scotty tries to communicate.  Sadly as I have stated before, all of them together do not come close to allowing him to say all the things he wants to say.  (If you would like to reread it Click Here.) This week I thought I would describe what a typical day of communicating, or trying to communicate looks like from my perspective.  Scotty's part of the conversation comes from the TaptoTalk program on his ipad or signing. For ease of understanding and flow I have written in a conversational format.

MORNING
BANG BANG BANG from the last bedroom door on the left...

Dad: Good Morning Buddy are you ready to get dressed?
Scotty: Can we go Bye Bye?
Dad: Maybe later. (bangs wall)
Scotty: Can I get a surprise?
Dad: We'll see  (yell)
Scotty:  Are we having a party?
Dad: Maybe this weekend.  (bangs his head)
Scotty: Can we go to church?
Dad: Today is not a church day.  Father Ahn is not there today.  (bites wrist)

BREAKFAST

Scotty: Can we go Bye Bye?
Mom: Maybe later.  (bangs wall)
Scotty: Can I get a surprise?
Mom: We'll see  (yell)
Scotty:  Are we having a party?
Mom: Maybe Soon  (bangs his head)

Scotty: Can we go to church?
Mom: It's not a church day.  Look at the calendar and point to our church day.  (bites wrist)
Scotty: Where's dad?
Mom: You tell me.
Scotty: Daddy is at work?
(throws pillow...if we are lucky it is only a pillow!)

Scotty: Where's Stevi?
Mom: You tell me.
Scotty: Stevi is in Chicago
Scotty: Where's Sarah?
Mom: You tell me.
Scotty : Sarah is at school.  (folds arms and harumphs)

* At his point you need to take the above conversation and multiply by 100...I am a known  overexaggerater...but not about this. I have witnesses....it would hold up in court!

We actually think his "harumph" is his version of a popular curse word...bad!
And I am pretty sure we can be thankful his fine motor skills are so poor:)

LUNCH

IN THE CAR running errands, at the movies, at a restaurant, visiting friends etc.

**Repeat the above conversation only this time multiply by 200 and add in the following.

Scotty:  Can we go bye-bye?
Mom: Buddy, we are bye-bye.  (bangs car window)
Scotty: Can we get a treat?
Mom: Maybe...I need you to be a good boy.  (puts feet on dash)
Scotty (spotting an airplane): Can we go on an airplane?
Mom: We'll ask dad.  (slouches down in seat)
**I know, bad parenting, but this response is my one copout...and I use it sparingly.

Scotty: (driving down Main Street or any road that could in any way possible lead us to Main Street)
Can we go to a parade and sit at Debbie's office?
Mom: Remember they only have a parade at Christmas.  (yells)
Scotty (spotting a hotel)  I want to sleep in a hotel.
Mom:  Soon.  (bangs his head)

Scotty:  I want a surprise.
Mom: Buddy, this is a surprise.  We are going fill in the blank.  (bites his wrist)
Scotty: Can we go visit fill in the blank?
Mom: Sorry, Buddy but they are at (work, school, etc.) (folds arms and harumphs)

DINNER

** And Repeat and repeat and repeat and repeat until he finally climbs the stairs and heads to bed at about 8:30.

BEDTIME
Mom and Dad...heavy exhausted sighhhhhhhhhhhhhhhhhh!

He runs on a loop...sunup to sundown.  I can't imagine those are the only thoughts that go through his mind.  Most likely they are the ones he can most effectively communicate.  You really have to give the little guy credit...he is persistent...he is focused.  He repeats the same thing over and over again...each time  expecting the answer to be different.

So, I spend my days carefully measuring my words...carefully trying not to flip the switch that turns him into a yelly, bangy, breaky, angry mess. By the end of the day I sometimes feel like I am going just a little bit crazy...Holding up both ends of a conversation for ten hours straight will make even the sanest person question their sanity.

But if I am honest, by about three in the afternoon all I want to do is scream, " NO WE ARE NOT DOING THAT...BECAUSE I SAID SO!!!"

But I don't because I know what will happen...but sometimes I do whisper it ever so softly... just out of Scotty's earshot.

 Ask and it will be given to you; 

seek and you will find; 

knock and the door will be opened to you. 

For everyone who asks receives; 

the one who seeks finds; 

and to the one who knocks, 

the door will be opened.

Luke 11:9-10

Believe it...Scotty does!

Umbrellas and Happily Ever Afters

In honor of Father's Day I am dedicating this week's blog to my husband.  Know that I most likely will be crying my way through this one, but they are tears of thankfulness and gratefulness for this man God handpicked just for me...just for our children.

I met Steve in 1983 during a particularly low point in my life...nothing ....absolutely nothing in my world looked anything like I had hoped it would.  And there he was in the classroom across the hall...in plain sight...at a time when my eyes were shut and my heart was closed.

Surely he was (and still is) quite a handsome fella, but that wasn't it.  There was something much stronger at work...I truly believe God's plans for this family were already in motion and unbelievably, to the shock and dismay I am sure of everyone around us, we were married a few months later.

1983

We will soon celebrate our 29th anniversary and I am unable to put into words how blessed and honored I feel to be loved by this man.  He is everything in this life I aspire to be.  He is kind, honest, unselfish, strong, patient, loving, thoughtful and committed.  As my sweet mother-in-law Loretta used to say, he is a good man.  And a good man he has always been. He is a man of deep abiding faith and other than our children...his faith is the greatest gift he has ever given me.

2008

I have often doubted God's choice in choosing me to be Scotty's mother.  I feel so unworthy...so underqualified...so incompetent, but I have never questioned God's choice in choosing Steve.  Ever.

1987  One of my favorite photos of my boys♥

In Scotty's eyes he is a Superhero.  

5 months- 15 months

Oh that laugh♥

Last year I wrote a letter to my girls on Father's Day.  I wanted to make sure they remembered all the things I have tried to teach them, because more than anything I pray that someday they both find a good man...like their dad.  Here is part of the letter.

 

Dear Girls,

In honor of Father's Day this year I wanted to take this opportunity to remind you of a few things about Dad that I never want you to forget.

Sure he talks a lot and has an opinion about absolutely everything under the sun, tells endless stories, prays until the food gets cold, continues to wear blue shorts from 70's, whistles loudly when you are trying to sleep, always has to go back in the house to retrieve something, mispronounces words for fun, says inappropriate things, burps in front of your friends, obsessively closes doors, turns out lights and follows you around telling you to pick up your shoes...But as far as husbands and fathers go he is without a doubt the very, very best.  

I know that most of the time you think 

I don’t know what I am talking about,

 but you will have to trust me on this…

I have no reason to lie.

 

♥ Stevi 1989♥

♥ Sarah Rose 1993 ♥

• He does everything he can to make my life easier and yes…..He vacuums…endlessly.  It may sound stupid but when someone does something that you dislike just to make your life easier...It is a big, huge, gigantic deal.  Most importantly and I can't emphasize this enough….NEVER, EVER criticize a man who vacuums!
• He rushes home every single day because home is where he wants to be… with us.  His work is not more important and his friends are not more important.  His family has always been his “most important.”  He always puts us first.

• He is completely and totally unselfish of himself and his time and is never too tired or too busy, even though he is always too tired and too busy.

• He is honest …Always. 

• He always admits when he is wrong.

• He stuck around. Not everyone would have.

• He was respectful to his parents and kind to his mother… Period…There is not enough I can say about that.  A man who is kind and gentle to his mother will be kind and gentle to his wife.

• He is a man of quiet faith and through his example he exemplifies how God wants us to live each day.  He makes me want to be a better person.

• He loves us...totally, completely, unconditionally.  He is strong and unwavering in his devotion to this family.  Grandma Loretta got it right...He is the very definition of a good man.  

Read it, memorize it, make a check list….

Whatever you need to do.  

Use your Dad as your guide when 

you are ready for your Happily Ever After.

Batman Capes and Pink Tutus

1992

And last but not least, no list would be 

complete without the Umbrella Story. 

Not long ago, I went to a movie with friends 
and when we came out it was pouring down rain.   
And there was your Dad....waiting for me with an umbrella. 
 In the midst of all that he had to do that day,
 including taking care of Scotty, he was thinking of me.  
This one simple act sums up your 
Dad and all the things I want for you. 

So my sweet girls, my prayer for each of you is that you will both find a good man, like your dad, who will 
always be waiting for you with an umbrella.

 Love, Mom

1992

2012

♥Happy Father's Day♥

He is like a man building a house, 

who dug deep and laid a foundation on the rock; 

and when a flood occurred, 

the torrent burst against that house 
and could not shake it, 

because it had been well built.

Luke 6:48

These are the Signs of our Lives

My friend Debbie, one of our villagers, suggested I write a blog describing the unique way in which Scotty communicates. She felt it could be very helpful to families searching for an effective way for their child to communicate.

It has really been trial and error and different stages of development have required different kinds of communication. Whenever anyone asks me how Scotty communicates the lyrics to the Linda Ronstadt song Different Drum always pop into my head. (Which by the way was written by Mike Nesmith from the Monkees…did not know that!)

♪♪You and I travel to the 

Beat of a different drum…♪♪

Scotty has always marched to his own rhythm…he is a beat off from the rest of the world. Though we walk side by side with this boy and occasionally catch glimpses of the world where he resides we will never hear the same beat…we will never understand his rhythm…and he will never understand ours.
 
As I mentioned previously in the blog post The I Love You Button (link), Scotty’s spoken vocabulary is limited to a small handful of words. His expressive language is limited to Mama, Dada, Bubba, Bye-Bye and something that sounds like “I love you.” He tries very hard to talk and participate in conversations. He tries to imitate any word he hears that starts with the letter “B”. He LOVES “B” words. To name just a few we have had a string of hamsters named Bubba, a squirrel named Bob lives in our backyard, we have a dog named Bonnie, his favorite place to go is bye-bye, his favorite food is a banana, and his favorite drink is beer…root beer that is!

His receptive language is astounding and since he can't filter out an of the sounds around him...he hears EVERYTHING! For example, when the kids were younger our life revolved around a multitude of activities that involved driving the girls and their friends here, there and everywhere.

More often than not the radio was on and the back of our mini-van was filled with chattering, giggling girls all talking at once. Through all that noise Scotty could pick up bits of conversation that we never heard and would let us know if someone in the back mentioned a dog, or pizza, or swimming, etc.…truly incredible.

His ability to communicate comes from a combination of sources. Part sign language some traditional- some made up, part technology, and part dragging us through the house to show us something.

Unfortunately, he also communicates by pinching, hitting, pulling hair, throwing things across the room, and punching holes in the walls. One of his teachers in middle school, Miss Stacey, assured us that all behavior is just a form of communication and it was her job to figure out what he is trying to say. She made this statement calmly and lovingly immediately after he had popped her right in the face. She was one of the good ones…one that God handpicked just for us…a marker in the road to help us and to guide us on our journey.

I have never forgotten this and even in our worst moments I try to remember that he is trying to tell me something. Sadly, more often than not I don't have a clue what it is.

He started signing at about 15 months. His fine motor skills are weak so most of his signs are approximations. His first signs were eat, drink, more, mommy, daddy, please, thank you and help…all of which he picked up very quickly. We tried to figure out how many signs he actually has and came up with the number 100. He has many signs that are the same so we must interpret them contextually. For example, he uses the same sign for bubble, bird, popcorn, fireworks and grapes.

He started making up his own signs shortly thereafter. Movie was the first sign he ad-libbed. He stomps his feet as though he is marching. Why you ask? Because he loved the Jungle Book and his favorite part was when the elephants marched! He quickly added ‘rewind” to his repertoire, back in the day of the VCR, by rapidly rolling his hands around each other disco style. Genius really if you think about it. Einstein couldn’t have done a better job.

Charades. Our life is just one big long game of charades and it can be exhausting! We have very few opportunities to sit down during the day. Scotty constantly needs to take us somewhere and show us something. He can’t say, “Mom the dog threw up on the rug” he has to take us there, usually stopping in the kitchen and grabbing a paper towel on his way. Thanks Buddy!

Even at night when he finally goes to bed he knocks on his door so we can come watch him act out something in the movie he is watching. So every night just as we settle in with a cup of tea and the DVR…we hear the knock/pound on the door...so down goes the footrest on the recliner...off comes the blanket and we make the long trek up the stairs so he can show us that the crocodile is trying to eat Captain Hook, or how funny the Three Stooges are, or he just wants us to sing Bye Bye Birdie with him. (“B” words!)

The last aspect of the communication conundrum is technology. He started out using the Picture Exchange Communication System PECS (link). From there he progressed to Augmentative Communication Devices such as the AlphaTalker (link) and DynaVox (link). He was capable of using them but uninterested. All good technology, but just not for him and they are quite expensive as well as cumbersome. And we always have to factor in his aptitude for throwing, kicking, stomping on, and using any object that is not nailed down as a weapon of mass frustration.

In the last several months we have purchased an IPAD and the TaptoTalk (link)program. There are many communication programs available, but this one seemed a good fit for him and it is also reasonably priced and user friendly. You can start out with something very basic and add on as needed. If you are looking for something I would highly recommend this particular program. It is a layered program and we are able to add our own pictures as well as record over the computer generated voice. My husband recorded a word or phrase for each picture. We have tailored it to the best of our ability to fit his needs. It is extremely difficult to coin a phrase...put words in his mouth. We basically narrowed it down to the following categories: food, play, friends, family, feelings, chores and activities outside the house like church, library, shopping, and restaurants.

Main Screen

Let's Go

Feelings

 We have noticed it has helped with behavior and his constant barrage of questions. For example, when he touches the picture of Steve it says, “Daddy is at work.” If he asks one hundred times a day where Daddy is...I have him go to the IPAD one hundred times a day and answer his own question. We have recently changed a few pictures to say, “Maybe later we can go to the store” instead of “I want to go to the store.” This way we are not making any promises but he still gets to express his wants.

We are so aware that the need to communicate in this boy of so little words is much larger than we will ever be able to comprehend. We often wonder what it must be like for him. Do words and phrases run through his head in the same way they do in ours? Are the words right there on the tip of his tongue? We can all relate in some micro miniscule way I suppose when we struggle to retrieve a word…but for us it is just one word..not all words...for us it is just one time…not for all the time.

We wonder if he talks in his dreams. All of us have had dreams where Scotty is talking, but sadly we can never remember what he said…I am certain it was important.

So, as you can plainly see Scotty has many different ways to communicate and still he is frustrated because none of them, together or separate, are able to help him say the things he wants to say. We are certain that this boy of ours is much more intelligent than any of us could ever imagine.

So we continue to struggle everyday in our attempt to provide him with the words he needs...even with all the ways he has to communicate...we are still the only voice he has.

Speak up for those who cannot 

Speak for themselves;

Ensure justice for those being crushed. 

Proverbs 31:8

**We have had a busy couple of weeks and I have been off on my self-imposed Wednesday blog posting deadline. If you read my blog post from last week you know we had a perfectly relaxing vacation. Perfectly relaxing…words seldom used to describe anything we do with this boy of ours… much less a vacation! Scotty also had some plastic surgery on his lip this week. Right before we left on vacation he tried to give one of the horses a kiss and it nibbled a chunk out of his lip. Lesson learned…horses do not enjoy being kissed on the mouth!