Monday, April 30, 2012

Words.

Pestle.

What does that word mean?

Why do I love it so much now?

It's the word Bella just said.

Back-up a second.  Bella rarely uses words (spontaneously that is).  If I physically pull her towards me, put my face in front of her and proclaim loudly, "Bella, say... " she will typically say some version of the word I just uttered.  Typically, when repeating a word, it sounds like she's yelling at you:)  If you've ever heard her say "goodbye" it's quite funny how loud and forceful her "bu-bye's" are... I love them though.

When Bella wants something she will usually try to get it herself...get frustrated....and come to me and pull me to the item. Once she pulls me to the general "area" where the item is...she walks away (as though I can read her mind).  This month, she started pulling me to the item and then, when prompted, would say the word.  This week, she has said 3-4 spontaneous, meaningful words.  By spontaneous and meaningful, I mean she actually said a word without me forcing her to do so.... and it meant something... not just a random word.  Oh the sweet utterings of my child.  I have longed for them since I first laid eyes on her.  I have dreamed of the day that she would pull me in for a longing hug and explain, in detail, all the reasons she loves me.  Today though, the word Pestle...meant more to me than any of that.

She came up to me, locked her sweet blue eyes with mine and said it.  Pestle.  I looked at her and wanted desperately to be able to understand what she was saying.... she means something...  come on Annie, think hard.  If she says a meaningful word, I am to reward her immediately.  I franticly racked my brains, then looked at her and said, "what do you want?".... she said it again... and maintained eye contact the whole time.  I finally figured it out....

She wanted her favorite Pretzels.

My heart exploded with love for her sweet face and mouth... her sweet word.  Pestle.  I ran to get it from the cupboard and brought them to her with such excitement.  She was proud of herself and so was I!  Please remember to love every word that your child utters friends... they are miracles.

Bella & Cousin Hannah


Saturday, April 28, 2012

Showing Support to the Troops: Care Packages

First: If you are interested in sending a care package to Josh or CLB5 (his unit), here are some helpful hints.  I will include their address below.  The unit LOVES getting letters from home.  Thank you letters can come from perfect strangers.  They also love hygiene products (body wash), candy, snacks...anything from the states! Please consider sending a package to this unit, what better way to support their efforts as they continue to fight for your freedom!

LT Earls, Joshua R
CLB-5, H&S 
Unit 42230
FPO  AP  96427-2230

Sending a care package from home is a way to show service men/women how much you love and miss them.  Last deployment, I sent numerous packages to Josh's ships and a couple of them never arrived.  In fact, it was so bad that some of the guys on his ship felt bad for him and mailed him a package from within the ship:(  That broke my heart. Well, this time around I'm hoping he stays put in Afghanistan!  Hopefully this first package arrives on time!

So, what do you send someone stationed overseas?  Hmmm....well, this is what I just sent Josh:

First, let me show you something sweet:


CLB-5 "Build-a-Bear" Day
Ok people, how awesome is this!  The family readiness coordinator Christine, set up a day for the families of the unit to build a bear that has a voice chip from the service man/woman in it.  They also had their own navy/marine uniforms to select from.  We chose to build a "monkey" because we decided daddy is a hairy monkey... sorry Josh :) This is Bella after the final product was complete...cute monkey huh?


Hygiene Products
Josh commented to me that besides notes and candy, one the most popular care package item has been hygiene products (body wash, shampoo, lotion, deodorant, ect).! Maybe it's because marines deal with sand storms like this one below?

This is a picture Josh took in Afghanistan recently.  No, that is not a mountain in the distance, that's sand....yikes.


Home-made Cookies / Favorite Candies
 What care package would be complete without home-made cookies and your loved one's favorite candies!? I put all of the cookies in plastic bags then placed them in a tightly shut tupperware with padding.  Will they arrive unharmed?  Probably not:(  A girl can try though!


Stuff That Makes You Think of Home
This one is an inside joke between Josh and I... we clearly love Churros.  When we go to theme parks, we get them as often as possible.... So, when I saw this, I just had to:)


Notes / Pictures
Nothing is better than a hand written letter from someone you love (or even from a stranger).  Email is nice, but knowing that someone sat down, touched the pen and paper....well, it makes it more special I think:)   Oh and pictures that are printed out are nice because they can be taped up for the service man/woman to see!


Anything From Your Kid (or someone else's)
 There's something special about getting hand-made art work/letters from sweet little ones.  Knowing they delighted in the process of making it and that they miss their daddy or uncle or loved one more than they could imagine :)

MISSING DADDY- We love Skype!
Until the package arrives, we'll have to tell daddy how much we love him like this.  Thank God for Skype:) Bella usually won't sit still to talk to her daddy, but on this occasion she had lots to say:)


MISS YOU CHAPS!




Friday, April 20, 2012

Autism Awareness Confessions...

In an effort to raise awareness for autism, here are eight confessions that I have regarding my daughter's autism.  I think these confessions could be true for most parents with children who have disabilities.  It's a long hard road but I believe God picks the strongest to look after these precious children and for that, I feel honored.

1. Even though my child has a disability, I wouldn't change a thing.

My child has a disability.  That is a tough sentence to utter at first but, as the years pass... it becomes easier.  In a weird way it makes me proud.  Autism was literally the LAST diagnosis I wanted to hear... only because it is so uncharted and misunderstood.  I have a child with a disability and I love her.  Would life be easier if she didn't have autism?  Absolutely.  But, my Bella loves me in ways no other child could.  It's in the way she strokes my hair with her fingers and holds me tight when we spin together.  Or the way it frustrates her if my hair is in a pony tail.  It is my life's goal to love her as vibrantly as any mother could.  Today I feel that without her autism, I would be a more selfish person.  So for that, I thank her!

2. I never pictured my life like this....

When I got married, one of the first things I thought about is our first child.  My husband and I... the product of our love.  What would this child look like?  What personality traits would they take on?  Would they be as mischievous as me?  Would they find love?  Would they break hearts or get their heart broken? Would they take care of me when I got old?  These are all questions I pondered.  The very instant of my child's diagnosis... these questions disappeared.  Shattered dreams.  A vague and impossible future existed before us.  It was actually like a nightmare.  But that was then, and this is now.  From that day forth, I promised to pick up all of the shattered dreams and piece them together differently.  It's like doing a puzzle with your eyes closed.  You can sense the pieces will fit, you can't see them but you know eventually something beautiful will be produced. Thankfully God is the master puzzle maker:)


3. I stopped feeling sorry for myself a long time ago...

I used to feel sorry for myself.  Like I deserved some sort of pity or reward for the day in day out stresses of raising a child with a disability.  Maybe it's because I heard so often... "I don't know how you do it".  It's hard to hear that your child is "moderate" on the spectrum from trained professionals.  Why couldn't she be "less autistic".   It's hard when Bella seems to have the most difficulty in even her special needs classes.  It's utter torture watching her physically harm her body in frustration because I can't figure out how to help her.  But you know what?  That's where God shows up.  He is a strong fortress.  Ever present in my time of need.  He speaks to me in those tough moments and reminds me that Bella is His child.  He entrusted her to me and I should feel honored to be her mother.  He reminds me that she is a walking example of His power, and divine mercy on our lives.  So, I don't feel sorry for myself anymore... I feel honored to share my life with others.

4. ...but it is still hard.

When I wake up each day, I am faced with the fact that I cannot erase autism from our story.  I walk around my house fixing things.  I never realized I did this until the other day.  I would straighten items so Bella wouldn't get annoyed, hide toys that frustrated her, move items in the fridge around so she couldn't see them and get fixated.  When I get invited to social events I stress about it for days wondering if Bella will have a "full blown meltdown".  I watch other children speak to her and realize she doesn't really notice them.  They try again and give up usually... or they ask their parents "what is wrong with her?".  Autism is hard to explain to a child.  Bless them for trying, especially Bella's sweet little cousins...they seem to never give up! Listen, I can hear you.... Yes, you in the grocery store.  The one who gasps at the pitch of Bella's screams.  You should feel lucky that I am a patient person.  Did you know that many mom's actually print our cards that explain autism so that they can hand them out to people in public who seem "appalled" by the tantrums or stemming.  


5. You complain that your child talks to much... I would give anything to have a conversation with mine:)

My child's voice is sweeter than honey.  It is.  When she says words (and I've said this before) I want to freeze time and play it over, and over, and over.  When she looks in my eyes and says even one word that makes sense... it literally "makes my week".  So, parents... please don't complain about "how much your child talks"... I don't say this because I'm annoyed.... I just want you to consider how precious their words are.  Listen to them, take it in... It's a miracle they can speak and express themselves.  


6. When I think about the future, it makes me nervous.

I will die before Bella.  It's the way life works.  Knowing this, the future becomes frightening to me.  Why do we do all sorts of therapies and try different methods to help Bella progress? Well, it's for her future.  To help her become an adult who can thrive in society on her own.  But here's the deal, I don't know her future.  I don't know how far she will progress.  Will she ever be able to take care of herself?  Will she have a husband who loves her they way her father loves me?  I hope and pray so... every day.  What if she doesn't?  Who will love her and care for her when we are gone.  My fingers ache just typing this.... God is good.  That is the only thing I know.  Jeremiah 29:11 is something I recite to myself when I get overwhelmed by her future "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future".


7. I feel guilty when I get angry with my child. 

The fact is, reasoning... spankings...threats... none of them work with a child who lacks understanding. Until Bella is able to understand emotion fully, I cannot punish her like a typical child.  Until she realizes that actions have true consequences.... until then.  When she was a baby and before diagnosis, I saw other moms putting their child in the corner, or grounding them to their room, or swatting them on the hand.  I tried each of these techniques and boy was I in for a big and hard disappointment.  The corner technique resulted in screaming for an hour straight with bruises on her head from banging it so hard.  I remember thinking, "what am I doing wrong, why is this not working?".  The grounding in the room resulted in the door almost coming unhinged from her flailing her body at it.  The spanking, well... she looked at me with such confusion, it hurt my heart so badly... I cried instead of her:(  So, when I get angry now.... I have to remind myself that she doesn't always understand what she's doing (in the way I want her to).  She does understand, but she needs to be reprimanded calmly, with unique reinforcers.  Take a toy away, withhold.  Show her no emotion.  That is how we punish now.  It's hard but we will get there:)

8. I love my child more than you could fathom.

I love my child more than anyone could love a child.  When I think of this, I'm reminded of another child.  He was born on this earth, lived a perfect life, and died for me...and for Bella.  He had a father that loved him too.  More than anyone could ever love their child.  It's called sacrificial love.  It's something I strive for every moment I exist.  I must, for Bella.

My sweet child.

Wednesday, April 11, 2012

Deployment: Round 2 AND Huge News for Bella!

We said goodbye to Josh over a week ago....

...deployment number two has officially started :(

Two deployments in three years is not uncommon.  In fact, many military spouses that I have met are in the same "ship" as we are (pardon the navy pun).  Although the media reports the war as "coming to a close", there are still thousands upon thousands of men and women being deployed.  Which leaves lots of lonely loved ones.

What does it feel like to say goodbye to someone you love? Someone you vowed not to live without.  Hmmm...  Ok, imagine trying to make hundreds of little mental memories of something you cherish... smelling their smells for the last time... feeling their skin... watching them laugh.  So many things to take in.... little glimmers of remembrance that must last for a while.  You do this so that you can close your eyes and recall that person vividly on those days where you miss them most. 

I promised myself I wouldn't start doing this until right before he left (missing him that is).  Fortunately, the last week he was home was extremely busy.  The day inevitably came however.  I tried not to look at him when he put on his uniform and packed his bags.... or talk about his departure until ... I had to.  I promised Josh we would find someone to watch Bella so he didn't have to say goodbye to her on base... just too hard for this sweet daddy.  So, after he and I had a good long "I will miss you beyond words" cry, he walked Bella up to bed, prayed with her, and kissed her goodnight.  My heart felt sorry for him. Not getting to see her face everyday:(

We drove on to base in the middle of the night, spent some sweet moments together, then he was off to be the "rock-of-a-Chaplain" that he needed to be for all of the other hurting families. This deployment is so different than his last.  Last time I saw him off on a Navy destroyer in front of huge crowds.  This time he's with the marines, who are stolen away in the middle of the night to head to Afghanistan.  Silent hero's if you ask me:)

Here are some photos of his departure and arrival:)

Saying goodnight to Bella one last time:)

Josh's sister Jaimee gave birth to Declan, meet your new nephew!

Love those marines!
The Chapel Josh will use in Afghanistan:)



Sunrise service, Easter 2012-Afghanistan

Navy Chaplain, for the marines.... confusing huh:)

families saying goodbye....

Guys traveling to the base...

How we communicate, when we can...

Last date night at Disney before he left... so fun!


In Bella news (and this is BIG):

As a mother/advocate for a child with autism, it has become very clear to me that selecting a good Pediatrician is vitally important for the internal and external treatment of their health (and for Bella, her autism).  Long story short, we had prayed hard about the possibility of Bella getting in to see one of the nations top Pediatricians who is certified DAN! (click to learn more) and has written books on vaccines and biomedical options for the treatment of autism.  

I found that Dr. Bob Sears (http://www.askdrsears.com/) was located within an hour of Temecula so I wrote appeals to the military, and jumped through some hoops and.... we got in!  Bella will be moving forward with Dr. Sears as her primary care physician!  God is so good.  I feel that this decision will make a huge impact on her in so many ways.  Biomedical treatment is an option I have been looking into since her diagnosis and I feel nervous and excited to move forward with this type of treatment knowing she will be seeing such a great doctor!  

Thanking God that this puzzle piece fit!

Sunday, April 1, 2012

Autism Awareness Month: CNN iReport from me:)

Friends,

CNN challenged me (as a parent of a beautiful little girl with autism) to share what autism is "like".  I could write a book on what Bella's does, how she acts, or how it makes life different and often difficult for us but, I won't.  

Today, I simply wanted to say this... autism is beautiful. It is beautiful because Bella makes it this way.

Here's my 30 second iReport on CNN's website...one of the many dealing with autism:

*My favorite part of this clip is that I'm in the bathroom.  Bella was running wild (so I didn't even try to get her on the clip) and the house was in disarray so, it was the only safe place;)