Tag Archives: light the white house blue

Baby, You’re a Firework [Revisited]

[Firework by Katy Perry]

[This post was one of my first and continues to be a favorite of mine.  It lifts me up when I am feeling overwhelmed by the hard work it takes to let my Baby shine...]

Go ahead – Ask my crumbling shower walls.  They’ve heard it all.

Taken a beating and then taken some more. 

Good day?  Bad day?  CRAPTASTIC Day?  It’s all in the song…

How often do you find yourself completely enveloped in a song that seems to speak directly to you and tell of your heart in that very instance?

At the same time you are experiencing the sounds of the music with your ears – your eardrums vibrating wildly – tiny hairs across your skin dance rhythmically, your senses are heightened as every neuron in your body fires in syncopation.

The arousing intro… that first verse that captures you… the chorus that makes you want to sing your heart out… the bridge that lulls you back into the theme… before bursting forth from your very core in a declaration of every emotion that has been buried within you… slowly building and building over time… you can no longer contain it… it takes on a booming voice of its own you never thought resided inside you…

“Baby, you’re a FIREWORK!”

One of the very first things we noticed about RM was her response to anything musical.  Whether it was a lullaby, a Signing Time dvd or a Sara Evans song.

I have always sung to my children before they went to sleep.  A favorite of late is “Somewhere Over the Rainbow”… at Christmastime it was “Silent Night”.

One evening, as I was singing to my delicious babes, snuggled in tightly together and smelling sweetly of baby shampoo, I noticed something new.

Or rather not new – but different.

If you love a child with autism, you are likely familiar with the term ‘hand-flapping’.  It varies from child to child.  It’s a form of ‘stimming’ or self-stimulating behavior – a mechanism by which many of our kids soothe and comfort themselves, or simply burn off an excess of nervous energy.

RM’s hand-flapping is particularly her own.  For several months prior to her autism diagnosis, us proud and ridiculous parents thought she was brightly finger-spelling to herself in sign language.  Go figure.  She ‘flaps’ in a puppeteering motion with one hand close to her face as she stares at the movements of her long fingers.

Anyways… this night as I sang to her – her fingers began to move in such an orchestrated and delicate dance – ebbing and flowing back and forth with such precision, reminiscent of John Williams leading the Boston Pops through a 4th of July rendition of the 1812 Overture.  It struck me so hard it nearly knocked the song from my lips –

My child can SEE this song I am singing.

“…Cuz, Baby, you’re a FIREWORK!…”

Synesthesia is the neurological and involuntary “crossing” of one sensory or cognitive pathway with a second.  For example, a person who experiences synesthesia may hear a car horn and simultaneously feel pain, or a word written on a page may appear as each letter a different color.

 I KNOW that my child has gifts. 

I KNOW that she sees things most of us will never see.

I firmly believe that not only is her interpretation of the world a magical one – it is valid.

Though she may not have the words to express the song in her heart today, I know she is experiencing my love with a burst of colors that nothing can compare to.  I know that my love for her will carry her through the times when she feels like she is drifting through the wind, hoping she could start again.

I know that when her skin feels paper-thin and her bundled nerves feel like a house of cards that are caving in – my love will save her.  Not because it is fierce and strong and unyielding to the exhaustion of a long day with autism, but because I know that she feels my love in more ways than one can imagine.

She feels it tightly wrapped around her always – a booming firework exploding in light – smelling of sweet wildflowers and spring – and tasting like chocolate.

“…Baby, you’re a firework!… 

C’mon, show ‘em what you’re worth!”

 ♥

“…Even brighter than the MOON – MOON – MOON…”

*

 


The Hangover

The last guests have gone.  Empty bottles litter the house and the yard is a wonderland of crisp white toilet paper dancing in the wind.  My head is pounding and my stomach has left the building – more than once.  The cat is missing and I have no idea how many days have passed since I was last conscious.

I have never had such a hangover.

I’m just so glad it’s over.

I grab the bottle of ibuprofen, pop a few like candy and chase them with a scalding hot cup of coffee sugared beyond recognition.  I schlep to the loo, reluctantly turn to the mirror to look myself in the eye and make yet another empty promise to myself and my body that I will never abuse myself like this again.

It wasn’t the worst event ever – just insanely over the top.  Too much going on at once, kids running wild and the grown ups could barely hear each other over the noise of general confusion.

There were a few fist fights that broke out during the course of the party, but nothing serious and as far as I can recall – no one had to be hospitalized.  Thank God.

I don’t think the cops ever showed up, but then again I wouldn’t likely remember if they did unless I was using my one phone call from jail to have more ibuprofen delivered to my cell.  Do they do that?

Anyways, it looks like today will be a gorgeous day outside so I had better pull myself back together and lose this hangover.  The first full spring day that our little family can spend together enjoying the outdoors and some sunshine.

Don’t worry if you missed this party – you’re invited to the one next year.  It’s called Autism Awareness Month and it’s one hell of a time.

 


April Showers: Autism and Military Awareness Abound

[Would I Lie to You by Eurythmics]

 

April is the Month of the Military Child

AND

Autism Awareness Month

 

 1 in 88 military kids have autism.

 

So it seems very appropriate that these two awareness campaigns would coincide.

 

[Editor's note: Before I continue with my speech on why these issues are so important – If you have not done so – PLEASE - show your support for our military families by leaving a comment on my letter to The President.  Scroll down to the bottom and 'Leave A Reply'. THANK YOU.] 

§

What’s the big deal about autism anyways?

What does that matter to me?

Well, here’s a primer:

  • 1 in 110 US kids and 1 in 88 US military kids have autism NOW.
  • If you were on the front lines in Afghanistan or perhaps dropped into Libya tomorrow, do YOU want the guy backing you up worried about his kid back home with autism who isn’t getting the services or support he or she needs?
  • If you cannot accept responsibilty for understanding, accepting and supporting these kids and families – then you ultimately are missing out on knowing some of the most incredibly brilliant and loving and unique individuals.  You also miss out on the most amazing things you could learn from being friends with one of these awesome Rock Stars.  Seriously.  Your loss.  Not to mention, their parents are some of the most fiercely passionate and articulate individuals you will ever meet. 
  • If you do not pass awareness down to your own children then your kids will miss out on experiencing what it’s REALLY like to run with the cool crowd. 
  • And last I checked, kids grow up and get older. 
  • If we do not invest in the support these kids need NOW to help them grow up and contribute meaningfully to society – you and I will pay BILLIONS more to care for them down the road. That was BILLIONS with a ‘B’. 
  • The numbers just don’t lie.  Every 20 minutes a newbie joins the autism club, and let me tell you – you are going to become ‘aware’ eventually. 
  • Aspergerians will eventually corner the technology market and you just might be asking one of them for a job someday – or ironically, asking them for help with your social networking tools. 
  • Not to be flippant – but really? Our kids with autism are someday going to rule the world with their creative and mathimatical brilliance, and their lack of getting caught up in your BS. 

Get on board and enjoy the ride instead of missing the train and paying the price.

 LIGHT IT UP BLUE and spread the word, My Friends.

[Editor's note: I will be highlighting a number of military-specific topics in relation to autisn during the month of April, so please keep an eye out!]


a Call to Duty

·

When you are a military family, you don’t question orders. 

There is a chain of command to follow.  Orders are handed down to the foot soldier and requests are passed up to the Commander. 

My soldier has always followed the orders given to him. He has been doing so for more than 24 years.

·

·

Today as a military spouse – I’m stepping in.

  ·

I’m sending a request up to my soldier’s boss   –   The Commander in Chief. 

A letter that asks our President to honor our brave military families who answer his call to duty by answering ours in return.

Light The White House Blue.  

 

1 in 88 military kids are depending on him.  

 

Please join me in this call for action. 

It is a critical necessity that we create opportunities for conversation about autism in our communities across the globe.   

>>Click here to read my letter to President Obama and leave a comment in support of Lighting The White House Blue!<<

 

As the proud military wife to a tireless soldier and mom of two incredible kids – 

I thank you for your time.

·

·

· 

[Editor's note: A heartfelt thank you to Jess, author of Diary of a Mom who began this quest for all of us.]

 

·


Still Workin’ for the Man

[Workin' for a Livin' by Huey Lewis and the News]

How do you look a battle-weary soldier in the eyes and say: 

I know you are exhausted, My Love.  I know it has been a long road through hell and back again – 

More than once.  

Yes.  25 years IS a long time. 

But you cannot retire just yet, My Love.  

Yes.  You will have to deploy again – go through hell – again.

 I’m sorry, My Love.

 ◊ 

On the topic of our healthcare crisis in this country, there are so many arguments to be heard.  So much talk about the costs; the political drama of partisan strategies and taxes, who should pay what and how should that money be spent. 

When I think of the healthcare crisis in this country, so many faces come to mind. 

I see the troubled face of a retired nurse of more than 50 years service in the healthcare industry.  I have listened as she shared her experience in a rehab home recovering from a broken leg.  “Nursing isn’t what it used to be.”

I see the tear-soaked face of a mother who has sat in a clinic waiting room for more than 2 hours with her screaming infant.  With no place else to go, she prays her name is called before she has to leave because she cannot miss another shift at work.

I see the embarrassment on the leathery face of a day-laborer asking the pharmacist for just a few pills of his monthly medication, because that is all he can afford.

I see my daughter’s chubby-cheeked smile.  I am terrified. 

 Do you see their faces?

 Do you see your own?  Or that of your child? 

And there are so many more to see.  Folks who have beaten cancer, and those who have not.  The unemployed ‘wealthy’ who find themselves homeless because cancer was the last thing they could afford.  The working poor in this country that are served eviction notices because a week of the flu cost them so much more than a bottle of aspirin. 

I also see the face of a brave and selfless soldier. 

Whether the face of a Wounded Warrior who cannot get the care he or she requires and deserves, or a father of two who has served his country for 25 years and cannot secure his own family’s future healthcare.  It IS a crisis.

1 in 88 active duty military dependent children live with autism.   

Only 10% of those children are receiving the autism therapies and care they require.

10%.

Though not an easy task, all active duty dependents are eligible  to apply for autism benefits through the military’s TRICARE insurance and ECHO program, and therefore could theoretically obtain it.  The access is sketchy at best for many of these families.  With changes of duty station, cycling deployments, and inconsistent providers, even the most diligent parents fail to get what their child with autism so desperately needs.

Now hear this – the moment the child’s soldier retires – that’s it.  Done. 

No more ECHO.  No more autism coverage. 

Retirees – WHO HAVE SERVED OUR COUNTRY FOR 20 YEARS – are not eligible to access the autism therapies that TRICARE provides active duty dependents.

My husband is 43. 

Our daughter is 4. 

We are ONE YEAR into her autism diagnosis.  My brave and mighty soldier is burdened with the weight of knowing that he must choose insurance coverage his baby girl needs over retirement he so richly deserves.

25 years of service.

3 wars.

Countless medals and citations.

It isn’t just autism, either.

The ECHO special needs coverage program is what we have relied on so many times throughout RM’s first years with 4q deletion syndrome.  It covers durable medical equipment, respite care, supplies, formulas, and home nursing care. 

THE MOMENT A SOLDIER WITH A SPECIAL NEEDS CHILD RETIRES – ALL OF THE ADDITIONAL BENEFITS ARE GONE. 

Let’s do some math and then I’ll let you go.

Most career, active duty military members joined when they were just babies themselves, between 18 and 21 years old.  Let’s say a soldier joins at 18 and has a child when he is 25.  That child is diagnosed with autism at 3 years old when the soldier is 28.  The soldier is eligible (and often forced) to retire at 38, when his child is 13.  That’s it.  No more autism coverage.

Did I mention that this soldier retired at the rank of an E-6 Staff Sergeant and earns a retirement check of just $1,815. per month before taxes???

I love you, Honey.  I know you are tired.

I know.

I’m sorry.

 ♦

If you haven’t done so, please support the Caring for Military Kids with Autism Act – HERE.

We cannot change the world without first being the change we seek.

Thank you.

Love,

Rachel

 


Baby, You’re a Firework

[Firework by Katy Perry]

Go ahead – Ask my crumbling shower walls.  They’ve heard it all.

Taken a beating and then taken some more. 

Good day?  Bad day?  CRAPTASTIC Day?  It’s all in the song…

How often do you find yourself completely enveloped in a song that seems to speak directly to you and tell of your heart in that very instance? 

At the same time you are experiencing the sounds of the music with your ears – your eardrums vibrating wildly – tiny hairs across your skin dance rhythmically, your senses are heightened as every neuron in your body fires in syncopation.

The arousing intro… that first verse that captures you… the chorus that makes you want to sing your heart out… the bridge that lulls you back into the theme… before bursting forth from your very core in a declaration of every emotion that has been buried within you… slowly building and building over time… you can no longer contain it… it takes on a booming voice of its own you never thought resided inside you…

“Baby, you’re a FIREWORK!”

 

One of the very first things we noticed about RM was her response to anything musical.  Whether it was a lullaby, a Signing Time dvd or a Sara Evans song. 

I have always sung to my children before they went to sleep.  A favorite of late is “Somewhere Over the Rainbow”… at Christmastime it was “Silent Night”.

One evening, as I was singing to my delicious babes, snuggled in tightly together and smelling sweetly of baby shampoo, I noticed something new. 

Or rather not new – but different.

If you love a child with autism, you are likely familiar with the term ‘hand-flapping’.  It varies from child to child.  It’s a form of ‘stimming’ or self-stimulating behavior – a mechanism by which many of our kids soothe and comfort themselves, or simply burn off an excess of nervous energy. 

RM’s hand-flapping is particularly her own.  For several months prior to her autism diagnosis, us proud and ridiculous parents thought she was brightly finger-spelling to herself in sign language.  Go figure.  She ‘flaps’ in a puppeteering motion with one hand close to her face as she stares at the movements of her long fingers.

Anyways… this night as I sang to her – her fingers began to move in such an orchestrated and delicate dance – ebbing and flowing back and forth with such precision, reminiscent of John Williams leading the Boston Pops through a 4th of July rendition of the 1812 Overture.  It struck me so hard it nearly knocked the song from my lips –

My child can SEE this song I am singing.

“…Cuz, Baby, you’re a FIREWORK!…”

Synesthesia is the neurological and involuntary “crossing” of one sensory or cognitive pathway with a second.  For example, a person who experiences synesthesia may hear a car horn and simultaneously feel pain, or a word written on a page may appear as each letter a different color.

 I KNOW that my child has gifts. 

I KNOW that she sees things most of us will never see.

I firmly believe that not only is her interpretation of the world a magical one – it is valid.

Though she may not have the words to express the song in her heart today, I know she is experiencing my love with a burst of colors that nothing can compare to.  I know that my love for her will carry her through the times when she feels like she is drifting through the wind, hoping she could start again. 

I know that when her skin feels paper-thin and her bundled nerves feel like a house of cards that are caving in – my love will save her.  Not because it is fierce and strong and unyielding to the exhaustion of a long day with autism, but because I know that she feels my love in more ways than one can imagine. 

She feels it tightly wrapped around her always – a booming firework exploding in light – smelling of sweet wildflowers and spring – and tasting like chocolate.

“…Baby, you’re a firework!… 

C’mon, show ‘em what you’re worth!”

 ♥

“…Even brighter than the MOON – MOON – MOON…”

*

 


Warrior Mamas Unite! Uh-oh, Parents Magazine!

Hello, Parents Magazine!!!…

…April!!!

Like… Autism Awareness Month!!!

Have you not noticed?!?!

****

An amazing Mama Warrior noticed in her new April issue of Parents Magazine, that there was no mention of autism, or Autism Awareness Month. 

No in-depth articles, early signs of -, living with -, etc.

So she shared that fact with the gang of us Warrior Mamas who decided it was worthy of a smack-down…

Check it out… THIS is what the magazine responded with:

“Hello everyone! We appreciate your feedback and the reminder of the importance of events like Autism Awareness Month. Our April issue does have an item in the Kids Health section about a bed tent for kids with autism and other special needs, and we have focused on autism-related issues several times over the past year in the magazine. In addition, in the weeks leading up to and during April, we will be publishing at least two online-only pieces about parenting children with autism. We take very seriously the importance of raising awareness about autism. We understand that there is always room to improve and are grateful for your suggestions. Thank you again for your feedback.”

 

And here is the “item” and singular reference to autism in their April 2011 issue:

****

So, as you can see… this is not acceptable.

Tell Parents Magazine what YOU think about their lack of coverage regarding Autism Awareness Month. 

Email: mailbag@parents.com

Help them to see that it affects ALL of us.

 

1 in 110.

1 in 88 military kids.

Not less… just different… and not to be ignored.

 

PS  If you haven’t yet left a comment for The President (of the United States) at Jess’ post… GET ON IT.

 

 

 

****


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