Monthly Archives: December 2011

Xoom Giveaway for CMKAA

HOOAH!

Motorola Mobility in partnership with Autism Speaks has committed to providing tech tools to families with children on the Autism Spectrum.

“The long-term goal of the program is to measure and analyze how Motorola XOOM has assisted in the developmental progress of the children, and work with researchers and application developers to make even more resources available to families with autistic children.”

You can see the full Motorola press release –> HERE <–.

The Motorola Mobility Foundation continues to seek other ways to help families with autism.  We were blessed to receive a free Xoom tablet from Motorola Mobility and it has been a godsend.

We had the most amazing Christmas celebration yet.  Because when the noise was too much, and the crowd too heavy for her to bear, RM took her new Xoom to a comfy chair and was at peace.  She did jigsaw puzzles and counting and reading sight words.  The hectic, crazy world around her faded away and she was focused and happy.  And learning new skills.  She was proud of herself, too.

The Xoom was ready to use out of the box, and downloading apps was quick and easy to do.  RM can manage it easily and in only a few days was navigating between apps without help.

I am very pleased to tell you that I have a second brand-new Motorola Xoom tablet (Retail Value $549) to give to a military family with a child with autism, courtesy of Motorola Mobility Foundation.

Here’s our chance to do something great for all military families with autism and maybe get some legislation passed, too, while also giving one more family the magic of this amazing technology.

The Rules

•  You must be a military family, active duty or retired in good standing, with a child diagnosed with autism spectrum disorder.

•  Entries must be submitted by persons over the age of 18 and a permanent resident of the United States.  (Military families stationed outside the US are eligible, but the Winner will be required to provide proof of duty station.)

•  Your family must have been TRICARE eligible for a period of at least one year within the last 36 months.

•  Entries should be 500 words or less and should describe your story of autism as a military family.  You may also choose to explain how the Caring for Military Kids with Autism Act (CMKAA) H.R. 2288 would benefit your family if it passes.

•  Entries may remain anonymous if you choose.  ALL contact information will be kept private.  However, with your entry you agree to have your story published online by both StimCity.org and CMKAA.org using your preference of identity stated in your entry’s “Name” field.

•  Winner will be chosen at random from all entries that meet qualifications stated above.  The winner will be asked for verification of military status/service and ASD diagnosis for the dependent.  All information will be kept confidential.  If verification cannot be provided within 14 days, a new winner will be chosen at random.

•  Deadline to enter is midnight, January 15th, 2012.  Winner will be chosen at random on January 20th, 2012 and announced here on StimCity.

•   By entering, you are agreeing to all Rules as stated above.

THIS CONTEST IS NOW CLOSED. WINNER WILL BE ANNOUNCED JANUARY 20, 2012.

THANK YOU!

Thank you for your service to our country.  We look forward to hearing your story!

Cheers!

Rachel

[Editor’s note: I have not received payment of any kind by Motorola Mobility or Autism Speaks.  I am a mom of a little girl with autism who writes a blog and was given this opportunity to share in the joy of a free Xoom tablet with another family that could benefit.  In doing so, I offer no endorsement of any kind for any organization, except to say that I think it’s really awesome that there are folks willing and able to help others – especially our military families.  Peace.]

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It’s in the Details

 

Ironically, on the way home this afternoon from Boston Children’s Hospital, I spotted a license plate on a blue Beamer screaming by – “DETA1LS”.

It truly is in the details, isn’t it?

When I look at my beautiful baby girl, now five-years-old and full of life and possibilities, I see all the details.  Every time I look at her.  There is never such a thing as a glimpse of this child.

I see every new freckle that has taken up residence on the apples of her cheeks.  I see the speckles of gold and brown in her radiantly green eyes.  I see how every wisp of her thick brown hair falls across her brow.

I see every moment of pain, every scar on her chest and belly.  I see every instance in which that belly rumbled in hunger and jiggled in laughter.

I see the pride in her smile for every word she managed to form and was understood.  I see every wrinkle of her nose for every frustration when she was not heard.

I see ears that beckon me to nibble on them because of the way they stick out and pop right into my mouth when I hold her close.  I see little rosebud lips that worked for years to coordinate something so simple as blowing out a candle.  I see her little overlapping piggie toes that she sticks in my nose after a tubby so that I can tickle them and pretend to gobble them up.

And I see her one perfectly unique pinkie finger with a perfect hooked little nail that tells the world she is one of a kind.  And she is mine.

Today we took a drive up to Boston Children’s to see a Plastics guru we shall call “Doctor T” who has made a career of changing little lives with the most delicate precision of nips and stitches.  I knew of him by way of my sister who lost a fight with a lawn tractor a few years ago.  This was the surgeon who specializes in microsurgery and helped to save her leg.  While taking my sister to a follow-up visit way back then, she stopped to show me a side room in the office.  It was filled with shelves of castings of congenital hand and foot deformities that Doctor T and his partner had transformed.  It was amazing.  I felt an instant ease there.  Like it was meant to be.  We left the appointment knowing that I would someday be back to see Doctor T with my baby girl.

We’ve had our share of ‘specialists’ for RM.  Most have been total blessings that not only have cared for her, but have shaped our lives as a family.  They have sat with us through heavy times and listened to us and our opinions on how to best care for RM.  Today was a familiar visit, and we knew right away that we were in the right place with the right person to care for RM.

We talked about how her pinkie causes her pain when its nail is easily caught on things and tears.  We chatted about her adorable overlapping piggies and hammertoes.  We talked about options, about the importance of certain things that could wait until a time when RM could cognitively participate in the decision-making process.  There was never a moment of urgency or fear.  It all felt right.  There was no rush, the conversation was never hurried.  The details were all there.

We decided to take the most minimally-invasive approach to start.  We will let Doctor T remove a portion of nail-bed that appears to be nonfunctional and he will replace with a skin graft.  So tiny, but could make all the difference.  You know, details.  He heard us speak of the importance of keeping as much of who she is intact.

He listened to our concerns about recovery.  How would he cast her hand so that she couldn’t ruin his hard work?  You know, we’re talking about autism here.  It can’t be that easy.  “No problem,” he said.  He will cast all four fingers together so she cannot disturb the graft.  See?  Details.

When I asked where he thought he’d take the skin graft from he initially replied with the standard groin/hip area.  But then he stopped mid-sentence and said, “Well, wait – she has scars from previous surgeries, right?”  Well, duh, lots.  Pick one.  Aflutter with this whole process of actually talking about details it seemed my brain finally caught up to the conversation and I blurted out, “Her feeding tube site!  There’s a bunch of extra skin there, it’s like a second belly button!”

With a quick nod and a peek of RM’s belly it was settled.  “Oh yeah… That’s perfect right there.  And I can take what I need for the finger and leave just a nice little straight line.  You’ll barely see it.”

You see, her pinkie is something she was born with and to us it matters.  We love it.  It’s special.  But that ‘second belly button’ was something done to her and we have no problem watching it disappear.

And there you have it.  Those crazy little details.

RM gets a pain-free pinkie that is still uniquely her own and a chance at wearing a bikini some day.

Over the SGM’s cold, lifeless body.

But you know…. details.

 

[Ed note: Please don’t forget to lend your support to the Caring for Military Kids with Autism Act (CMKAA) HR 2288 –> HERE <–.  And remember, you can harass your Congressperson several times a day at no cost to you ;0)]


OMG. If TRICARE Was Working, I’d Shut Up Already.

I shall be brief.

Yes.  1 in 88.  No kidding.

Seriously.  We need to fix the system of military families getting autism treatment for their kids.  Period.

There is no valid arguement about CMKAA and comparing military versus civilian healthcare.  The two are separate issues and I can only fix one freaking thing at a time.  Here’s an idea:  Since we have a bill right now to fix it for the guys and gals who are fighting and have fought to save your ass, let’s just run with what we have and use it for ammo later to get everyone what they need.  I promise to be first on line for that fight, too.  Saying ‘no’ to supporting treatment for our military kids with autism is akin to saying that only George Clooney and Hugh Jackman warrant necessary treatment for prostate cancer should they need it because they are nice to look at.

Yes.  Some military families have actually navigated the TRICARE/ECHO system successfully and gotten autism therapies covered for their kids.

Do you know exactly how many?  No?

Let me tell you.  In a two year period, only 1,374 out of 13,243 active duty military dependents received payment on three or more claims for service using an autism spectrum disorder diagnostic code.

I kid you not.  That’s 10%.   And if you really want to argue some more and somehow say that is more than enough – those 10% could not possibly have all received the recommended 30-40 hours per week of proven treatments, because ECHO caps the dollar limit at roughly 11 hours per week.  That’s less than half of what is recommended.

TRICARE, DoD meeting on autism services.

So if you feel good about our brave men and women continuing to keep you and your loved ones from getting blown up by terrorists while less than 10% of their kids with autism get treatments – Godspeed to you.  I wouldn’t want to be in your shoes when they reinstate the draft.

Peace.

If you have a change of heart and want to support CMKAA, click –> HERE <–.

[Ed note: current FOIA requests for TRICARE data is being witheld, but estimated number of both active duty & retiree dependents with autism is now approximately 30,000.]


Why 1 in 88?

Since I began advocating for military kids with autism, the question I am asked most frequently is:  Why are the rates of autism higher for military kids?   

Is it chemical exposure?  Vaccines?  WTF?

The rates are not necessarily higher, my friends.  It’s complicated.

But I will start with the statistic itself and how it came to be.

In 2007, a Marine spouse and mother of a child with autism filed a request under the Freedom of Information Act (FOIA) for data on the number of military dependent children with Autism Spectrum Disorder.

From the period of June 2006 through June 2008, there were a total of 13,243 active duty dependents with autism.  If you take the total number of active duty military dependents and divide by the number of those with an ASD diagnosis you get a simple equation:

1,177,990 active duty dependents / 13,243 active duty dependents with Autism Spectrum Disorder =

1 in 88.

The catch here is that TRICARE required a minimum of three claims for service using an ASD diagnostic code within a 24-month period to be included in the data.  A trip to the ER for a broken leg wouldn’t count even if the injury was incurred because your kid with autism thought he could fly.  In layman’s terms, unless the child with autism was actually receiving appropriate autism treatment being administered via TRICARE, the child was not counted.  I can tell you my own daughter is just one example of those not included in the 1 in 88 because she receives all of her autism therapies at an outplacement school.  (Remember, we are an Active Guard Reserve family and do not live near a military base.)  Can you imagine how many kids are missing in this TRICARE-driven data?

Out of the 13,243 active duty kids with autism only 1,374 were enrolled in the Extended Care Health Option (ECHO).  ECHO is the separate arm of TRICARE that theoretically provides autism services and classifies them as special education rather than medically necessary.  I could go on for days how ECHO is messed up, but the short version is that enrollment requires prior admission into a discriminatory program called Exceptional Family Member Program (EFMP) that identifies your special needs child and is supposed to make sure that the family is only placed at duty stations that have appropriate services and facilities available to the child.  The dirty little secret is that soldiers are reluctant to apply because it has the potential to really screw your military career opportunities.

Now let’s talk dependents of retirees.

The same report listed 8,784 retiree dependents with autism for that time period.  Imagine how many there really are today.  The math starts to get really nutty, but if you attempt to calculate how the retiree dependents contribute to the overall statistic using DoD numbers of retirees, you get an even higher rate of 1 in 67.

Let’s say you serve in the military for twenty years and you are eligible to retire.  You and your eligible dependents will still receive TRICARE standard medical benefits, but your parting gift is the end of ECHO autism services.  That’s right.  Gone.  It doesn’t matter if your child with autism is five or fifteen.  You get nothing.

Did you know that there are now countless ‘retirees’ that didn’t quite make it to twenty years of service and are left without special needs benefits for their dependents?  Why, you ask?  Because there is such a thing as a ‘medical retiree’ – a soldier who is forced to retire due to injury or disease.  They also lose ECHO.  Yes, that means a Wounded Warrior who retires from service with a special needs child loses all special needs services for that child.

So you still want to know the answer to why the rates of autism appear higher than the civilian population?  I don’t have the exact answer.  No one does.  And frankly, I don’t really care right now because right now we have treatments that work – yet our military kids are being denied access to them.

So for the 1 in 88, can we please just throw these kids a bone?  Isn’t autism hard enough?  Aren’t deployments and Mom or Dad being gone for a year while getting shot at kinda sucky?  Why on earth would we provide medical care for our wounded warriors but not our warrior kids?

The Caring for Military Kids with Autism Act (CMKAA) H.R. 2288 makes autism therapies, including Applied Behavior Analysis (ABA), a part of TRICARE standard medical benefits.  It removes the dollar cap and allows for a child to receive the recommended 30-40 hours per week of services.  Most importantly, removing the autism therapies from ECHO means that the services are still available to retiree dependents.

This isn’t rocket science.  It’s simply the right thing to do.

Please show your support for CMKAA by clicking –> HERE <–.

You will be taken directly to an easy-peasy form field that takes less than two minutes to complete.  I have written a sample letter you can cut & paste and your support will go directly to your Representative in Congress.

It’s time, people.

Let’s get it done.  Hooah!

[Ed note: current FOIA requests for TRICARE data is being witheld, but estimated number of both active duty & retiree dependents with autism is now approximately 23,000.]


“I’m Just a Bill” by CMKAA

[Updated May 28, 2012]

For anyone looking for a refresher on how the Caring for Military Kids with Autism Act – formerly H.R. 2288 (CMKAA) is going to need your help to get passed, I’m handing over today’s post to Schoolhouse Rock.

Our “Bill” passed the House, but is now in jeopardy of dying in the Senate.  He has already been shot down once.

Don’t let CMKAA die in the Senate Armed Services Committee.  I don’t have the cash or enough booze for the funeral.

Thanks.

Click –> HERE <– to sign the petition at Change.org.  Every signature is sent to every Member of the Senate Armed Services Committee. That’s where “Bill” is waiting to be voted on. He already passed in the House.

23,000 military kids are counting on you.


An All-out RANT on Apathy

Hi.

My name is Rachel Kenyon.  I live in Connecticut and I am a proud army wife… blah blah blah. 

I am pissed.

Why?

Jess at Diary of a Mom summed it up pretty well, “The hoofbeats ain’t comin’ my friends, we ARE the cavalry.” 

Yesterday, I devoted an entire Saturday to working on the Caring for Military Kids with Autism Act (CMKAA) – H.R. 2288.  I worked on the site I had created back in June when the bill was introduced to try to streamline the process for lending support.

I can’t make it any easier to do.  A caveman’s dog could do it.  I give all of the information necessary to understand why this bill is critical to the estimated 30,000 military kids living with autism and their soldiers who serve.  I wrote a sample letter for folks to cut and paste, and with one click every citizen in this country has a direct link to contact their Member of Congress even if they have no earthly idea who that is.

What more could you ask?

I read other military parent blogs, I scan the dozens of overlapping military social networks.  I hear a lot of complaining by our families about how hard it is and a lot of shock when civilians hear what we are facing in the shadows of an autism diagnosis.  I also know that not nearly enough of the ‘outraged citizens’ of our country – military or civilian – are outraged enough to take action.

So let me break it down once again.

1 in 88 military kids with autism.  Less than 10% get the treatments they need.

Deployments and moving every couple of years all suck.  Our military families embrace the suckage as best we can because that is what we signed up for.  But as Household Six writes, “I wouldn’t tell the woman with breast cancer, ‘Well, you knew what would happen having breasts and all.’”  Seriously.  No one joined up counting on autism and a complete lack of appropriate services while serving their country.  I often share the comparison that my daughter had open-heart surgery at four-months-old to the out-of-pocket-tune of eight bucks for hospital parking, but autism will bankrupt you, screw with your marriage, scar the typical siblings for life and leave you wanting a very stiff drink with breakfast.

TRICARE can kiss my ass.  The DoD can kiss my ass.  Apathy can kiss my mo’fo’ ass.  None of this has to be so damned difficult.  Countless studies, reports and prior attempts at legislative fixes make it clear – our kids with autism need intensive treatment and military life creates real barriers to care.  No soldier should have to serve for more than 20 years and not be able to retire because of a child’s disability.  No military family should be moved across the country or across the globe on orders to do so and lose all services for their child with autism.

Why are we not seeing this change?

Because not nearly enough – not nearly enough – of the families affected by these circumstances are standing up and speaking up.  Not nearly enough – not nearly enough – friends, grandparents, aunts, uncles, cousins, teachers and neighbors are taking three minutes out of their lives to say something about the mistreatment of our military families and their children with autism.  And like spoiled children, Congress accomplishes little because We The People are not holding them accountable.  We simply cannot accept that.

There are a handful of amazing military parents of children with autism fighting every day, sacrificing themselves for the good of all.  They are the real heroes.  I am talking about moms and dads that make me look like a wet-behind-the-ears-Private with underwear on my head and a kevlar vest around my ankles.  But like me, these military parents aren’t waiting to hear the hoofbeats of a cavalry that isn’t coming.  We have figured that part out.  But none of us can do this without the voices of those we are trying so desperately to help.

Speak up.  Tell Congress that our military’s service to our country is worthy of care for all military children.

There is no excuse that this is too hard, or takes too much effort.  If you have time to take a dump in the bathroom alone for more than three minutes, consider yourself blessed with a luxury that many parents of autism do not share.  So pay it forward and take three minutes to save a child with autism.

Merry Christmas, I did the work for you:

One-click support of CMKAA is —> HERE.

Cheers,

Rachel

[Ed note: On April 28, 2012, a petition was organized at Change.org to move Congress to take action on HR2288. PLEASE sign and share and share again. Thank you!]


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