Monday, December 12, 2011

We Interrupt Our Regularly Scheduled Program (updated with video)

I normally avoid all things political on this blog.  Autism doesn't care what color your skin is, what your income is, if you vote liberal or conservative, or whether you vote at all.  Frankly, I'm so up to my eyeballs in the reality of my day-to-day life, that I don't have time to give a crap.

Oh, except for that time Sharron Angle, a Senate candidate from Nevada, railed against insurance for both maternity care and autism,  putting "air quotes" around autism in a speech, as if we're making this stuff up.  That pissed me off.  Happily, the good people of Nevada remembered her douchiness when she was looking for "votes."
Rachel Kenyon and her 5-year-old daughter,
who has PDD-NOS and 4q-Deletion Syndrome.
So. Much. Cuteness.

So, yeah, I like to keep politics out of this blog.  But I'm making an exception after being contacted by Army wife Rachel Kenyon (of the blog Stim City) and asked to support Caring for Military Kids with Autism Act (CMKAA) - H.R. 2288.

Pretty much if you can use the words military, kids, and autism in the same sentence, I'm going to be on board. I served in the U.S. Army.  In my experience, no matter what your symptoms were, the Army's approach to medical care was to issue two prescription-strength ibuprofen and orders to get back to work.  The process of getting the two ibuprofen tablets usually involved a minimum of 18 military acronyms.  I can't imagine what it takes to access autism services for your child in that setting.

Rachel wasn't asking for me to support her efforts with CMKAA financially.  That's a good thing because our money situation is always wicked tight.  I can't give to every charity I would like to give to.  But I can send an email to support a really good cause.  Emails are free.  (Unlike autism services.)  All Rachel was asking me to do was send one email, with one click.

I sent the email, but I'm going to do one better, and ask you to consider supporting CMKAA, too.  I read up on it, and here's what I learned:
  • There are 22,000 children of military families affected by autism.  
  • Less than 10 percent of those children are getting the services they need.  
  • CMKAA would streamline the acronym-filled process for military families to access services for their autistic children through TRICARE, the military's healthcare system.
  • It would also remove the extremely stringent cap on services that can be received.  
  • H.R. 2288 was introduced last June by Reps. John Larson (D) of Connecticut and Walter Jones (R) of North Carolina. See? It's delightfully bi-partisan.
The bill was initially referred to the House Committee on Armed Services, and then was referred to the Subcommittee on Military Personnel on July 19.

And there it sits.

Rachel's husband, a U.S. Army Sergeant Major,
came home on leave a day after their daughter was born.
He returned to Afghanistan 14 days later.
And sits.  While 22,000 children of military personnel are affected with autism, and struggling to get the services they need.  Children of men and women who have literally volunteered to die for us if necessary.

Dude. Being a military parent (spouse or servicemember) is really hard.  Being the parent of an autistic child is really hard.  Put those two things together and you have a recipe for an olive drab suckfest that will stretch your marriage and your bank accounts to the freaking brink.

If you've ever seen the Schoolhouse Rock episode "I'm Just a Bill," you know what happens to bills that sit in committee: they die.  You know what keeps them alive?  Nagging your elected representative.  Come on -- you're a mom.  You probably nag people in your sleep.  How hard can it be?

I've already emailed my Congressman, and let him know that as a veteran of the United States Army, as a mother, and as a voter in his district, I support Caring for Military Kids with Autism Act (CMKAA) - H.R. 2288.

The Sergeant Major and his
little girl.
If you'd like to lend your support, you can click here to let your Congressperson know that you'd like them to support H.R. 2288, too.  Rachel has made it incredibly easy to do it -- in one click.  You don't even have to know who your Congressperson is.  You put in your ZIP Code and the website will tell you!  Rachel has helpfully provided a template letter, so you can just fill in your name and the Congressperson's name.

It's so easy.

Unlike being a serviceperson struggling to help his or her autistic child.

One click.

All photos used with permission, courtesy of Rachel Kenyon and StimCity.org. You can read more about Rachel, her family, and their military life here.


If you a military family with an autistic child, or just want to follow the news on CMKAA, you can follow American Military Families Autism Support online, on Facebook, and on Twitter


* * * * * * *


What's that? You didn't click yet?  Here's a little video of a 5-year old, high-functioning autistic boy seeing his dad for the first time in eight months, after his dad returned home from Iraq.

Normally when you see these videos on the news, the dad (or mom) surprises their child in the middle of class, or in the middle of the gym at an assembly, or whatever.  Crowds like that don't usually work for autistic kids.  This reunion is all the more awesome for its simplicity.



::hands you tissue::

So, um, yeah, that was shameless of me to add this on.  But still ... could you click now?  Thanks.  You're awesome.

Thank you to Amy at Pregnant Chicken for sending me the video; and especially to Nikki, the mom in Virginia whose son and husband are in the video. xoxo.

46 comments:

  1. Beautifully put. And so easy to make our voices heard: like you say, one click. May everyone who reads this start clicking away in support!!

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  2. On behalf of four of my friends who would be directly affected by this bill, I thank you. Your words mean so much. And those pictures! Precious! How could you not take a moment to write a letter? I did mine while I escaped from the kids for one moment. Finished just as they found me.

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  3. It was more like 1847898 clicks, my Congressman's e-mail program is a nightmare. Anyhow, I managed to slog through. When we were in the military I knew many families of children with autism who were having a hell of a time getting services. I can't imagine it would have been any easier for us.

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  4. Done! My friend's son is autistic. They are not military, but still fight with their insurance company for the services he needs. Autism is a medical condition, just like diabetes or cancer - it should not be that hard!

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  5. I have severe asthma (not helped by my parents smoking, but that's another rant). My dad served in the Army for 22 years, but it wasn't until I had civilian health care that my asthma really got under control verses it being treated as a crisis situation (a routine crisis starting at age 4)by my doctors. I can't imagine how difficult it must be for parents of children with autism to receive services. I'm a pacifist, but I will copy your blog post to mine because regardless of my politics children deserve the services they need.

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  6. Thank you. Everyone.

    Please keep clicking ;0)

    Drink a pot of coffee and maybe click again ;0)

    Can't hurt. It WILL help. It HAS to.

    I believe in this legislation. I walked this Bill all the way to Capitol Hill. (My feet hurt like hell, but I will keep marching on. Will you join me?) This Bill is my baby, too, and I cannot watch it die.

    Please join us in making autism therapy accessible to all military dependents. It's simply the right thing to do for our troops and their rugrats who serve alongside them.

    Thank you,
    Rachel Kenyon
    A.K.A. Mrs. Sergeant Major

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  7. Thanks for posting this. This has been nagging at the back of my mind for a few weeks now and then as I see it referenced.

    Can I ask a favor? While I'm always super impressed with my own ability to write (more impressed than just about anyone else, strangely), I'm not really sure how to begin a letter to my congressman asking him to address a bill.

    Would you feel comfortable sharing with your adoring fans what YOU wrote? I could use it as a template. (I promise to change the actual words, just like when I copied that article out of the Encyclopedia Britannica in 5th grade for my report on the "Otter", changing their words to my own to avoid the evils of plagiarism)

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  8. Thanks for posting AND THANK YOU for YOUR service. Rachel is working harder than anyone I know to get this passed and everyone's help it WILL get passed. Thanks for your support.

    -The SGM

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  9. From CMKAA site, here’s a sample email you can copy and paste:

    “I am requesting [add your Rep's name here]‘s support of H.R. 2288 – Caring for Military Kids with Autism Act (CMKAA).

    Tens of thousands of our military dependent children are living with autism. One in eighty-eight children of active duty servicemembers are affected and less than ten percent of those dependents are getting the autism therapies they need and are entitled to.

    Currently, TRICARE military insurance segregates proven autism therapies such as Applied Behavior Analysis (ABA) into a separate arm of care called the Extended Care Health Option (ECHO) and places a dollar cap on ABA – essentially limiting the number of hours per week to less than half what is typically recommended for a young child newly diagnosed. ECHO enrollment is secondary to completing the application process for the Exceptional Family Members Program (EFMP) – another barrier to care. Often precious months to years are lost navigating through these processes, when proven therapies are shown to have greater success at the earliest possible intervention.

    The Caring for Military Kids with Autism Act eliminates the dollar cap on ABA while also removing barriers to care by providing ABA under the umbrella of TRICARE Standard care. It also extends these vital services to the dependents of retirees who have made a career commitment to our nation’s freedom and security.

    I support the Caring for Military Kids with Autism Act because [add your own personal comments here].

    Thank you,

    [Your Name, Address, Phone, Email]“

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  10. Done and done! Thank you so much for posting this...as a teacher right outside Ft. Hood, the world's largest army base, I see these families all.the.time. I am proud and honored to support these wonderful people any way that I can. Thank you thank you thank you for the opportunity!

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  11. Done. You both have done a really wonderful, beautiful thing. I won't get started on my feelings about how much of the short end the military gets.... that's a rant more than this space will allow... But know that I am fully with you both on this... and have sent my email out. And yes... it really was a very simple process!!! Thank you ladies!

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  12. Like trydefyinggravity, I have many friends who would directly benefit from the passage of this bill. Thank you for helping spread the word and get those clicks and letters on the move!

    And thank you for YOUR personal service to our country.

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  13. I would love to help but live in Canada, so I don't have a congressman to email. Can I still click somewhere too? I have twins that were recently diagnosed as on the spectrum and I know how hard it is to find services, figure things out and just get through the day every day.

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  14. My congressman is Sander Levin, who just happens to be the ranking member of the House Ways and Means committee, and he also happens to be very supportive of children's health issues. Hopefully, my e-mail will help convince him to use his influence to convince the Military committee members to move on this very important bill. That you for bringing this to my attention, and showing me how to help.

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  15. As a Navy wife (hubby is a submariner) with three special needs kiddos (two with autism), I want to say thank you for putting the word out about this. Now if only we could get benefits for the children of retirees. :(

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  16. Done and done. And will be reposting the issue on my own blog <3
    http://fluffimama.blogspot.com/

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  17. Thank you! It is hard! Really hard! For myself we are stationed 500 miles from any family and friends. Theres no one for me to fall back on. No help. No break. Husband deploys for 12 months and heres mommy and 1 special needs child and 1 infant left to fend for themselves. The Army does have alot of stuff offered for usually a limited amount of families and thats if you go through the red tape and jump the hoops and on top of that, thats IF you are even told or find out about it. We need all the help we can get.

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  18. We are currently waiting for my son's 2nd evaluation appointment through the developmental peds dept at the local military hospital. He was diagnosed for school purposes a year ago, so he has an iep for kindergarten, but tricare wouldn't pay for civillian services, and no one could tell me where to go or what to do. I FINALLY found out that there was a dev peds department and called for an appointment in August. They said I needed a referral, so that's more red tape from his primary care (who didn't believe he had asperger's, but the school eval showed him very obviously on the spectrum), finally, got the referral in september and tried to schedule an appt....first available is in January. Thank goodness for special education services in school and google. He is at least getting speech and OT, which has helped, but we need more! The run around is so frustrating, especially when sometimes it feels like no one knows where to send you!

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  19. such an easy way to help. Thank you for posting!

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  20. Done! You made it super easy to help and I hope lots of people will take the opportunity.

    You rock and so does the Kenyon family!

    xo

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  21. I've done it too. Rachel is amazing. I'm so glad you posted this here.

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  22. Done. I don't know anyone who needs these services, but the fact that it doesn't affect me personally doesn't mean it's not important. Good luck to all the parents of children with autism in getting the right services, AT THE RIGHT TIME.
    ~physicsmom

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  23. So glad I have no "real" problems with my daughter. Glad I can try to help someone in such an easy way. Thanks for posting!

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  24. Thank you so much for sharing this. I was not even aware of this bill. And I promise you, it's very much needed. Military doctors refused to even discuss the possibility of my son needing help until he was 5 years old. As soon as he was 5, they suddenly tell me they're sure there's "something" going on and put us on a year-long waiting list for an ititial eval with a developmental pediatrician. There isn't one here, so they have 2 that travel here once a month. They admit one or both of them sometimes doesn't show up. You can guess where I told them to shove that. They finally agree to send us to a civilian doc, and tell me the only one I am allowed to see is 3 hours away. Long story short, I spend 4 months battling office drones. One day I sit down in an office and tell them with EVERY ounce of crazy conviction in me that I am not leaving until they help my son. Within 5 minutes they "found" a doctor an hour from my house who had open appointments. Since then, I have been battling to get other referrals, battling to get him help at school, while getting billed even when the proper referral is in. And please know that I'm one of the lucky ones. If I had relied on the military system my son would still be on a waiting list. Even if they diagnosed him, they wouldn't help him with the therapies he needs. I used to be an Army nurse, and my husband is a (currently deployed)Physician Assistant. I know our medical system does wonders for children with various medical and surgical needs. It chronically fails children with developmental and behavioral disorders. Please spread the word, we need all the help we can get.

    Sincerely,
    Maria Martin

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  25. Thank you for making this so easy and accessible to so many! I hope everyone clicks!

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  26. Done, and might I add, so easy! Now to pass the word along :)

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  27. Done and Michelle, post it on your FB or Twitter pages for those friends of your in the states. Sometimes just keeping the ball bouncing will make the biggest difference in the game! :D

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  28. Thank you for your service! I happily wrote my Congressman in MI.

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  29. I am shocked by how many military families I know who are left without services.

    Such a simple thing to do for people who do so much for the safety of our country.

    Thank you, thank you, thank you, for all you do.

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  30. http://www.stylelist.com/2011/12/11/kate-winslet-titanic_n_1141498.html?icid=maing-grid7|aim|dl15|sec1_lnk2|119523

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  31. I did it - and it was easy. Thank you for your work and providing the link to the link :)
    Kim in MT

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  32. I did it. I don't normally get involved with anything military-related because I choose to refrain from it but I still am lending my support for this because I know the nightmare of trying to obtain something for my child that he NEEDS and DESERVES.

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  33. I am so glad you posted about this. My husband was in the Air Force and I can only imagine the nightmare it would be to get my daughter's services covered if he were still on active duty. Thank you for your years of service and for what you are doing now.

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  34. I sent my e-mail! I also just cried. Thanks for passing on this info!

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  35. Done, and passed on! As a mother of an autistic child I can tell you, our young children NEED special teachers, doctors, medicine, and social intervention. IF all goes well they can be so successful.
    1 in ever 110 children is born with autism! Think about that number.

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  36. Did it with a smile and a prayer that my congressman, a pretty decent guy, will actually help. I'll let you know! As a daughter raised in the Air Force and who worked summers at military hospitals, I totally get the nightmare scenario and can't imagine the heartache and stress our military families are enduring and shouldn't have to. Thank you SO much for posting this!

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  37. Done! We were active duty for 8 years and I can't even begin to imagine the fight that military families who have children with autism have to go through. I can remember spending hours on the phone with Tricare and it was for basic care. Military families go through enough. This shouldn't be a struggle as well.

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  38. I did it, too, and passed on the info to the rest of my department (I work in Spec. Ed. at a high school). Military families deserve extras, and they're not even getting basics.

    A great quote (long ago) from Scott Adams (Dilbert guy) on his blog: "These people [men and women who volunteer to serve their country] are risking their lives for us, because they feel we are worth it. Let's make sure we are."

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  39. Having never been a part of the military, but having the greatest admiration and utmost respect for all those who put their lives on the line every day to protect our way of life, it sickens me that our government, for the ridiculous amount of wasteful spending they do, cannot see to it to provide medical care for military personnel and their families. In my opinion, if you serve in the military, you should be able to serve with the peace of mind that you and your family are taken care of - 100%. It's disgusting how we, as a country, treat our service personnel and their families. We should shame our government into action. I'm clicking the link right now.

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  40. So I clicked on the link and sent an email about a week ago. I got home tonight and someone from my representative's office had left a message asking me to call them to discuss 'how they can help'. I will be calling them and telling them they can help by getting this bill passed! Keep clicking people! We can make them listen to us!!

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  41. What kinds of services are they thinking of funding? Many of the autism programs I've seen are worse than no treatment - they waste all their time on things like eye contact and getting the kid to stop handflapping and teaching a minimally verbal kid to say please and thank you, instead of focusing on the skills that would be most useful for that kid. Too often the ultimqate goal is a kid who is 'indistinguishable from his peers' instead of a kid functioning the best he can. It's like telling a blind kid not to use a cane because it marks him as disabled.

    I'm high functioning autistic, I'm a university student, I'm majoring in my obsessive interest, and I am not definitely *not* indistinguishable from my peers, nor do I want to be.

    Oh, and autism is *not* a disease like diabetes or cancer. The comparison of autism to cancer is not only offensive to autistic people, but to people like my mother, who lost her Mom to ovarian cancer when she was 20 years. Autism won't kill the child if left untreated, or sometimes even if treated. Autism gives about as much joy as it takes away, even if neurotypical people often can't see it. (When I see a kid flapping his hands and squealing while playing a video over and over, that's not 'perseverative behavior'. That's joy.)

    So I'll reserve judgment until I find out what kinds of services are involved. If it's teaching communication skills, self-care skills, academic skills, etc, or helping reduce painful sensory sensitivities or behavior that hurts the child or others, I'm behind it. But if they tell a child to have 'quiet hands', if they try to discourage obsessive interests, if they tell a kid that they're being bullied because of their weird behavior instead of because of the bully's own psychopathology, if they teach a child politeness before teaching them communication, then I don't want those services funded.

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