a rant, a book and a plea for help

*

I have a LOT to tell you. A LOT. In fact, there’s a big arse blog jam building up in my poor little foam-stuffed head. It’s gotten so bad recently that I’ve begun a list of reminders for posts that need writing so that I won’t forget. There’s ‘family photos – how’, ‘what is a choice?’, ‘appreciation gifts’ – the list is long and I am desperate for time to sit and write. But it’s going to have to wait.

You see, my friend, Rachel has something to say. And it’s important – really important – that we hear it. And it’s even more important – in fact I’d say that it’s morally imperative – that we act on what we hear.

And since I believe in this with every fiber of my being, I’m going to sweeten the pot for you a little. Not only do you get to DO THE RIGHT THING with almost no effort, in virtually no time, with no money, no commitment, no signing up for anything, no going anywhere – no nothin’ but good ole moral fortitude, you ALSO get the chance to win a prize.

Yup, this really is your lucky day.

I am giving away three SIGNED copies of Michelle Garcia Winner and Pamela Crooke’s book, Social Thinking At Work – Why Should I Care? at random to three people who take three minutes out of their lives to support the children of our nation’s heroes. Details on how to enter will be at the bottom of the post. 

I’ve never done a giveaway of any kind before. I simply don’t have the capacity to manage them on a regular – or even on a once-in-a-blue-moon basis. But this matters.

1 in 88 military children with autism matter. The fact that only 1 in 10 of those 1 in 88 is getting services matters. The fact that a soldier at war cannot care for his or her children matters.

It’s not OK.

But you – WE – can help change it.

I’m going to turn the mic over to Rachel. I warn you, she’s frustrated. She’s angry. She’s tired. And she has every right to be. Please help.

***

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 22,000-plus 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

***

To enter into the drawing for a book, simply click on the link above and follow the instructions to copy and paste the letter you find there to your Congressional representatives. Then come back here and leave the word ‘DONE’ in the comments. That’s it. Make sure your e-mail address is correct so that I can contact you if you win. For extra credit, please share the link and ask others to help. As a matter of fact, if you share it, come back here and tell me that too and I’ll enter you again. This is easy friends, and it is, quite simply, the RIGHT THING TO DO.

For more information on how to help these families meet their immediate needs, please click HERE.

Thank you.

Sample Tweet:

1 in 88 #military kids has #autism. 10% get srvcs. YOU can help. Pls read, act + RT – http://wp.me/pNO8N-2Fw #CMKAA @diaryofamom @mrssgmkenyon

 

217 thoughts on “a rant, a book and a plea for help

  1. I did this as soon as Rachel posted it yesterday and then shared it on my FB page, too. This is such an important issue; thanks for helping to keep it in the fore of people’s minds.

  2. Done!

    My sister is currently a reservist in the US Marine Corps who is planning on becoming an officer after finishing up her degree. My bf just finished his contract with the USMC and is in school but also contemplating going back in as an officer. I’ve watched families I worked with deal with TRICARE and I pray that it will get better.

    I’m going to be posting this on facebook at a more acceptable time so all of my friends can see it. Thank you for bringing this to my attention.

  3. Done. Did it when I saw Rachel’s post. I even requested to hear back from my Congressman about the issue, which affects at least four friends of mine. Jess and Rachel, you two are incredible. Those hoof beats are coming.

  4. Did it yesterday too when I saw Rachel’s post. Don’t blame her one bit for being pissed. I have never had so much communication with my elected officials as I have this year. My hooves are in motion. Will repost today too.

  5. I can’t click personally as I am in Canada, however I have forwarded your post to my sister in Virginia, USA and have asked to click and send it off to everyone in her community

  6. Done! I am sharing as well. It is disgusting that kids of military families can’t get their much needed services.

  7. Thanks Jess, for helping Rachel and all military families (and civilian families too!) living with autism. I contacted Mr. Todd Akin, representative for Missouri, via e-mail this morning. Hope it helps!

  8. Done… and shared all over. Military children should have the same services civilian children have. That’s not saying a whole heck of a lot for the military because many communities are under-served. It sounds like the military has redefined that word, when our expectation is that they should be setting the example.

  9. thank you for helping stand up for us. 3 out of my 4 kids have autism and right now only 1 of them gets any type of services. I’ve been fighting tooth and nail for the other two. My husband has been deployed twice in the past five years and we’ve move three times in the past three years. Please thank your friend for me as well. I can’t imagine how she found the time to do all that. God bless her and all my military brothers and sisters fighting the same endless fight!

  10. Done. Several times. Still working on getting the whole CT delegation on board. It’s ridiculous that they are not, but so goes the battle. Let’s get this taken care of stat!!

  11. Done…and will share with others. From personal experience, parenting a child on the spectrum is challenging enough, without moving and without having my spouse deployed. Best of wishes…

  12. done.

    and my first time writing my congressman. Jess, often you’ve said something along the lines of, those of us who can advocate, should advocate for those of us who can’t. thanks for all that you do!

  13. Done, and shared on both my personal page, and my Blog’s page on Facebook! Thank you so Much Jess and Rachel for leading the Calvary!!

    I support the Caring for Military Kids with Autism Act because I am a Former Marine, and I have a child with Autism. My Husband is serving in the National Guard. We ARE a Military Family living with Autism. While we don’t have the option of Tricare due to Him being National Guard, we know first hand the day to day struggles raising a child with Autism brings, and the non stop battles with Insurance, Doctors, schools, the list goes on. Our Military is therefor, fighting a Battle on two fronts, the one to keep our country safe, and the one at home to raise their special needs child. We signed up for the one to Protect our Country, and we love our families very much. Please stand with us in helping to ensure that our children get the care they need.

  14. Done!

    This line really got me – “I wouldn’t tell the woman with breast cancer, ‘Well, you knew what would happen having breasts and all.’” It’s a great analogy.

    I haven’t written much to my representatives in the past, but autism has lit the fire under my butt recently. Pretty soon they will recognize my email address. Thanks for posting this.

  15. I don’t need no book Jess.. I did it because I know you would do it for my kids too… because this community is like family to me.. because her kids and your kids are like my kids (even though they are totally different). I did it because God cares about our kids too and we are all his hands and feet and voice.

  16. Done.
    “I support the Caring for Military Kids with Autism Act because it’s the right thing to do. These parents are serving our country with everything they have. They are fighing battles and wars with their jobs. Autism, without assistance, intervention, therapy, creates a homelife of battle and war as well. This is really unacceptable.

    Thank you,

    Leslie Hughes”

  17. Done and shared and happy to do so! So many reasons to support this bill, thank you for making it so easy to participate!

  18. Oh, if I could do this for you I would but I am Canadian!!
    I am shocked by the numbers you spoke of, what is wrong with your congress that this is even remotely acceptable??
    Seeing as I can’t message your congress myself I have forwarded this link to friends & family in the US asking them to please read and do the right thing.
    Hugs and prayers being sent your way for a successful outcome of Bill CMKAA.

  19. Done. I remember what it was like living in VA and finding out my seventeen-month-old child with an autism diagnosis would qualify for four hours of speech and two of OT, per month. No ABA until he hit school age, and I was neither single, nor had to move every two to three years. It was devastating. My heart goes out to all of these families, best of luck in the bill’s passage!

  20. Done! I’m forever in awe of how well you and Luau handle the challenges of finding resources for Brooke. I cannot imagine anyone having to do so while also managing the challenges of military service.

  21. Done. And while I wholeheartedly agree with what Rachel has said, please let me also say that while military life and raising a child with autism has to be tremendously stressful it is important for those families to still work the system (i know, like we have time) and try to find the help that is available. While Tricare is not a perfect set up, currently it is the ONLY insurance that covers ABA therapy at all (that I am currently aware of- even our state Medicaid does not cover ABA therapy). I am not military but I come from a military family and live in a military town and Im not sure if its just because our base is such a large part of our town, but military families here get bumped up on waiting lists because they know that they may be moved before their time is up on the list, leaving civilians waiting for longer periods of time. And I know of many, many families that have been transferred to bases that have more services for their child with autism available to them. Basically what Im saying is please continue to look for those people locally that can help you navigate the system and get you the help that IS available although a LOT more definitely needs to be done to improve that!

    • Brandy, I appreciate what you have shared. If you don’t mind me adding from working with many experienced advocates across the country – one of the largest obstacles facing autism therapies for our military families is disparity in access to those therapies. Whether it is the thousands of Guard families that do not live near a military base at all (like our family), or the services available in specific communities whether military or civilan. One of the points you bring up concerning local services (not TRICARE) such as Medicaid is of huge concern to those of us working toward better care for military families. While your community may ‘bump up’ military families because of PCS moves, MOST do not and there is no legislation that protects a military child’s services when that family is moved from one duty station to another. So not only does that child lose whatever educational services they had in place (the parent must reconvene a new IEP in the new district and start that fight all over again from scratch – there are no protections in place for the IEP itself), that child must also be connected to all new medical providers for all therapies (SLP, O/T, etc)… We all know how difficult it is to get ABA for our kids. Can you imagine it taking a year to secure ABA, then moving after 12 months to start all over again? Civilians can choose where to live and work and where to secure services for their child. Military families are bound by duty station and orders to find services in a new town, state, country, etc., without safeguards in place to keep what they already have.
      Again, thanks for your perspective and your support of our families. It is a complex issue with many sides and many fixes required. The same is true for our civilian kids with autism – but no current legislation that mandates care for autism affects military TRICARE dependents. *That* is unacceptable for all that our families do to protect us.

      • Thank you for your words. You are so right and there are so many issues to deal with all at once for our military families. I just wanted to make sure that some of those families don’t assume that all bases/towns are equal and think that there are no services available to them. Every branch/base/town is different and its important to find local people to help them navigate such a confusing and, unfortunately many times, disappointing road. Working together we can all make things better for all of our kids. Good luck to you and your family and thank you for your family’s service!

  22. DONE!
    And SHARED the link! 🙂

    Here is the “Thank You” link from my Congressman:
    http://lamarsmith.house.gov/Contact/thankyou.htm

    I just wanted to add that we were a military family for 20 years. My husband retired last year and we lost MANY services for our son Andrew, due to his status of “retiree.” I can personally feel Rachel’s pain for the military families. My husband served his country for 20 years! And all we get is a “thank you for playing” from the government. I was MORE than happy to contact my Congressman and Share this link!

    ~Cheryl

  23. Done. I have contacted my Congressman. I have several friends who have children with autism and I see what happens when the kids don’t get what they need. Good luck! Thank you for working so hard! I also have shared

  24. Thank you, Jess, for all all you do to raise up the needs of our military children. Military families shoulder TREMENDOUS responsibilities today (back to back combat deployments, ongoing relocation, the list goes on…). Military families impacted by autism face even more extraordinary circumstances. Raising awareness is essential to let the military family know they are cared for and their community supports them! Thank you for sharing that message.
    Semper Fi,
    Karen D. (Marine wife, mother of 3 – one with autism)

  25. Done. And I admit I get a lot of these kinds of requests (PTA president here), so I’ve kind of begun to tune them out, and often don’t follow through with them. They all matter, of course, but this one especially so.

  26. Done! I am also a Navy wife and mom to an amazing boy with autism. We’ve moved 4 times in 8 years. Thank you for your efforts!

  27. DONE. As the mother of an autistic child myself, I cannot imagine what these families are going through — the nightmare. Thank you for sharing this with us.

  28. Done & shared! My husband is a firefighter and is gone for days at a time… I’ve often wondered how military moms with special needs kids do it.

  29. Done! Coming from someone who has a son with autism, I know how tough it is when BOTH parents are home and fighting for services. I can’t imagine what it’s like for our service men/women to worry about defending our country AND worrying about who will fight for their own kids’ rights back home. Good luck & God bless!

  30. Done, and done. All blessings to our military families who deserve the best of care for their defense of our country.

  31. done and done. This is a cause that my father brought to my attention not to long ago. Thank you for posting this so that we know what we can do to help these families.

  32. Done. I hope that things improve. It is so important to have stability and support for all military children, but particularly when they are facing other issues …

  33. DONE!! As a Marine wife (my husband’s been in for 25 years) and our youngest being autistic… life is never dull and always a test of strength. THANK YOU for getting the word out!

  34. Done to 2 congressmen because my zip went to one and my real congressman is another. Will share on Facebook and through email too. Thanks Rachel and Jess for making us aware of this huge problem.

  35. Done!! and posted!! As a mother of a precious little boy with autism and a Air Force veteran thank you for the post and the easy on click!

  36. My sister Michelle Crisson told me about his and I sent a letter to our state rep too. I wanted to say that we, my sister and I, can and do feel such a sense of pride in our military . Our father served, his brothers, their uncles, our grandfather on my mother’s side and I could go on several generations back but the point is that it really is scary to me that our government expects these men and women to serve our country and they are still not getting the benefits they deserve and should be getting. If they can’t get the help and support they need how will I as a civilian parent get it? Trust me, I know what it is like to have a kid with this kind of disability( my son has Fragile X Syndrome –the only known genetic condition on the Autism Spectrum) and I hope that our little letters help in some small way. Good Luck to you and your message! Oh I also posted a link to the info on how to post a letter to your rep on my wall. 🙂

    • Hi Tammy. There are other chromosomal disorders that often result in co-morbidity with autism. 47xyy for instance, in our case, which often goes undiagnosed and occurs in 1 in 900 boys. If anyone would like more info, please visit rarechromo.org Thanks, sarai

    • *ahem* You funny.

      Seriously – Luau, My Friend. Thank you so very much for all you and your amazing wife do to support ALL our military families – especially those with autism.

      It’s much appreciated by myself, the Sergeant Major & all our proud military families.

      Hooah!

  37. Done! and though I live in PA shared with a friend whose husband is running for a senate seat in CT (and is ex-Navy himself) in the hopes that if he wins he will help us from the inside! (No need to enter me in drawing, I’m a big fan of Social Thinking already! Superflex is definitely in our pantheon of heroes!)

    Jess as always thanks for pulling us out of the day to day to come together for one another and Rachel on behalf of everyone who serves – thank you!

  38. My child is one of the 10% getting all her services. I live in a bubble of my own making. Learning to work the system was hard at first. I am so glad I didn’t have to deal with base doctors or command. I did it almost all on my own. My daughter is in 33 hours of ABA a week and has 1 hour of O/T and 1 hour of speech. I hope soon everyone will be able to get these services and more. Keep fighting for what is right and fair!

    • Gina – that is wonderful that you were able to accomplish so much for your child – you deserve many cheers for fighting so hard for what is right. I feel very much the same – like we live in a bubble. As an Active Guard Reserve family not living at a base, we were at the mercy of a school district that had nothing to offer, we chose the route of hiring a special needs attorney and pursuing outplacement where we knew she would get 30hrs/wk ABA and not waste her day at a local preschool that accomplished nothing with her for nearly two years. Thank you and your family for your service and thank you for your support of other families, too!

  39. Done x 2!! I broadcast the one-click as soon as I read Rachel’s post. My son is the 1 in 88. He’s also the 1 in 10 of the 1 in 88 because we fought like hell for 6 months to get services in place. It shouldn’t be so hard, but alas it is. Thank you for passionately supporting military families! You are a blessing.

  40. Done! I am not military and my child does not have autism, but she was born with multiple disabilities due to congenital cytomegalovirus.

  41. done. and rachel…my god, thank you. not only for the sacrifices your family makes as a military family, but also for the sacrifice and commitment you are making to help other families who are suffering from the isolation and overwhelm of navigating life as the parent of a child with autism. finally, and most personally, thank you for your honest, angry, loving description of life for those of us with children on the spectrum, and the stress such a life can put on siblings, and marriages, and extended families. the guilt and rage and joy and desperation that one feels as a parent whose sole purpose in life seems to have been reduced to the bearing and repairing of a family buckling under the unique pressures autism can lead a mother(in my case)to despair. but in my experience, the deadliest symptom of them all…is the isolation. isolation often comes comes with the territory, particularly in families in which one parent is unavailable, such as military and single parent families. but even for families with full resourses available, the literal daily work of navigating schools and health and treatments, things as seemingly simple as meals, sleep, homework, and friendship, not to mention the needs of siblings, who may feel bewildered and hurt by their inevitable sense of abandonment, and your own rising despair in the face of the inconceivable truth of this abandonment, at least at some level. there is more, so much more, of course. and there is great joy, too, just as there is for any family, one might say. but here lies the danger, i think. as your life seems to cycle through radical joys and losses, hope, despair, numb fatigue, hope, fatigue, numb despair, PROGRESS!, despair…and so on, it does so at a pace that feels unsustainable. to move from despair to hope to progress and joy and back down to despair multiple times a day, sometimes experiencing the entire whiplash effect within moments, hour by hour….to go through this and see that the world around you seems to manage the ups and downs of life and family and parenting with so much more grace?….it inevitably leads one to wonder…am i crazy? deficient? lazy, lost, lacking? i must be…and so the isolation begins to feed on and replicate itself. it’s like quicksand, really. and all you want to do, in truth, is love your children, and find some path upon which they might find some small or large sense of self, and success, and peace. just this. you gave up your own dreams long ago, along with your expectations, followed by the slow stripping of your sense of what is, and what might be, a life well lived, a sense of safety, and what it means to love. and for every step forward made by any member of your isolated family, there seem to be three or four or five crushing failures to attend to. or perhaps they just feel like failures. either way, the intensity of living such a life, is challenge enough. but the cruelty of the isolation, is in it’s perpetuation of the myth that one is simply not as strong, determined, loving, what have you, as the rest of the functioning world, with their big extended family gatherings, and their family and friends all inclusive and highly adventurous social lives. how could you feel otherwise, when the world is dancing forward with the day, and you’re home, engaged for the quazillionth time in a debate regarding the inherant logic and/or rationality of brushing ones teeth. or perhaps you’re home engaged in what can best be described as something akin to teaching a frightened tiger how to use a stick of deodorant. whatever your situation, the isolation of it drains it of all is humor(and there is great humor to be found), and leaves you feeling inherantly deficient.
    all of this is a very long way of saying,
    thank you rachel, for reminding me, in your beautiful and passionate description of what life can feel like for those of us with children on the spectrum, that no, i am not crazy. this really is my life. and this really is challenging. and when i have one of these rare moments, in which i can go online and read the words of others in my situation…i can laugh. heck, i can breathe. you clearly do so much, rachel, and yet even in all your frustration and outrage at a world that cannot stop to help even when the cost is nothing more than one click? even in this expression of your anger, and evidence of your acheivement, i did not, for one moment, while reading your letter, crazy, or deficient, or in any way, alone.
    so.
    for that, i thank you.
    again and again.
    and for that, the very least i could do, was finish the work you poured your heart and time into,
    with one simple click.
    so yes.
    click.
    done.
    of course, because your words and the thought of families already bearing so gracefully the sacrifice and suffering that comes with military life being forced even further into isolation, the one seemingly curable side effect borne of autism….? the thought of children like mine, facing the challenges inherited from the often nomadic and insecure life of military families, as well as those of autism, cut off from what small offerings of assistance and guidance and care that should be their rightful inheritance? it’s heartbreaking. and obviously has compelled me to spend more time than just the one click. and i’m glad of it. but i’ll not waste a moment more of yours.
    just one more thank you.
    and i’m
    done.

  42. Done and done. To all the military families, you have enough pressures and have made enough sacrifices. The least this country can do is help you help your children get all the ABA therapy that they need. (We can work on helping all the other children later. That’s our mission at Behavioral Lifeboat.) You are in our thoughts and prayers. Hopefully, our Representatives and Senators feel the same way. If they don’t, they will be hearing much more from a different block of voters reprsenting a much more important 1% – our children!

  43. finally got an ‘answer’ from mine…

    Thank you for contacting me regarding H.R. 2288, the Caring for Military Kids with Autism Act. I appreciate your taking the time to share your thoughts with me. In order to make sound decisions, it is important for me to hear from Kansans.

    As you know, H.R. 2288 would require TRICARE to cover behavioral health treatments for military dependents with autism. Upon introduction, the bill was referred to the House Committee on Armed Services. If the bill comes to the House Floor, I will be sure to keep your views in mind.

    If you have any additional concerns, please do not hesitate to call on me or Keith Dater of my Washington, D.C. staff. It is an honor to serve the people of Kansas in the United States Congress.

    Sincerely,

    Mike Pompeo
    Member of Congress

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