ACT today

Photo from Rome News Tribune

**

I’ve been holding onto the following post for far too long. I’ve stared at it on the screen, been ready to hit publish, then stopped short time and again.

I’m just not convinced that it makes the point strongly enough. I don’t think that the words adequately convey the intensity, the exigency of the situation. I’m afraid that the post loses something because it focuses on such a miniscule slice of the overwhelming challenges that our military families with autism face. I just don’t know how to get them all in.

But I can’t keep waiting to get it right. Because autism doesn’t wait. Because deployment sure as hell doesn’t wait. And because the families of those who serve our country should not have to wait another day, another hour, another MINUTE  for the help that they need for their children.

**

You hear the words, Your child has autism.

Your world is upside down.

When you finally make it far enough through the haze, you kick into gear.

Where do you begin?

Your pediatrician is likely little to no help.

You start asking questions.

You network.

You find people who CAN help.

You educate yourself. You learn everything you possibly can about all of the various interventions, therapies and educational plans that are currently available. You measure and weigh, compare and contrast, hem and haw and make decisions based on what is best for your child.

You piece together a puzzle of therapies. You create and foster a tapestry of support between home and school, public and private. You scrap and save and sacrifice to make it work. You hang on by a thread.

You follow up. You monitor. You evaluate and analyze. You ensure that services are being delivered as promised. You hawk and hover. You prod and pry. Since you don’t have a child who can tell you about their day, you rely on the adults in their world for insight.

You run from office to office, specialist to specialist. You make sure you’re home on time for the speech therapist and the ABA specialist. You push to create a social pragmatics group or to create access to the local sports team.

And through it all, you work to build and nurture your relationship with your sweet baby.

There’s nothing you wouldn’t do.

You facilitate play dates with classmates – hoping upon hope to help your child create a friendship. Just one.

You fill out reams of paperwork, answer thousands of questions. You go from doctor to doctor with your child, searching for the one that might have the answer.

And then you leave. For twelve, thirteen, fourteen months at a time.

You fly to the other side of the world to fight in a war that your child can’t begin to fathom. You’ve been working so hard on helping him find words, but there’s nothing you can create out of  ‘More’ or ‘Cookie’ that will help explain war.

You serve your country because you believe it is right. You don’t ask for anything in return.

You wonder what would happen to your baby if something happened to you.

You see, your husband is in the military too. And he is deployed too. This is war. It happens.

Think it’s hard to find a sitter on a Saturday night? It’s time to find one for fourteen months. One who will piece together the puzzle of therapies, create and foster the tapestry of support between home and school, public and private, scrap and save and sacrifice to make it work, hang on by a thread, follow up, monitor, evaluate and analyze, ensure that services are being delivered as promised, hawk and hover, prod and pry, rely on the adults, run from office to office, specialist to specialist, making sure to be home on time for the speech therapist and the ABA specialist, push to create a social pragmatics group or to create access to the local sports team, facilitate play dates with classmates, fill out reams of paperwork, answer thousands of questions, go from doctor to doctor, searching for the one that might have the answer. One who will painstakingly teach him one word at a time. Who will love and nurture your child as you would.

One in eighty-eight military children is on the autism spectrum.

One in eighty-eight.

And while their parents are fighting for our country, many of them are also fighting for access to treatment for their children.

That is simply not OK.

EVERY SINGLE ONE of those children deserves a chance.

Every one of their families has earned our support.

To not do right by our military families is unfathomable.

We must do better than we are doing now.

If we are to survive, it will be by helping one another.

These people are serving our country. I cannot stomach allowing them to fight another war back home.

Please, watch the video below.

Help if you can.

Pass it on to friends.

E-mail it. Post it on Facebook. Put it on your blog. Tweet it. Twit it. Toot it.

I don’t care what you do with it – just get it out there.

Our military families should not have to fight for services for their children. Period.

Please watch the video, then CLICK HERE for more information about how you can help.

This isn’t about politics.

This isn’t about ideology.

This is about kids who need our help.

NOW.

Please do what you can.

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16 thoughts on “ACT today

  1. Pingback: ACT today (via a diary of a mom) « Footprints

  2. a very important comment from a reader on diary’s facebook page – PLEASE READ!!!

    **
    SBM ~ I am a parent of a child on the spectrum and an Air Force wife…thank you for your post. Another important part of the military world that makes it hard on these kids is the constant moving and uprooting. And the fact we often are moved to locations without resources to help our children, like therapies. I appreciate you shinning a light on this and I hope more people take notice.

    ** REPLY **

    Diary of a Mom ~ SBM, first of all, thank you so very much for your family’s service!!!

    secondly, thank you for bringing that up!! that was exactly what i was referring to when i said that i felt like the focus was too narrow!! i couldn’t for the life of me figure out how to capture the struggle of moving around constantly, uprooting children who desperately need familiarity and trying to re-establish support networks and therapies and relationships etc. i was at a loss as to how to convey all of that.

  3. Thank you for posting this TODAY. It HAS to be shared with EVERYONE!

    I gave birth to a medically fragile child in 2006 while my husband was serving in Afghanistan. Four years, a feeding tube come and gone, open-heart surgery, and many sleepless nights later… I called my husband in Afghanistan this past February to share the news with him that our daughter has autism. From 7000 miles away, he was punched in the gut with a more terrifying diagnosis than any other we had been through before. There’s no pill for that. No surgery to correct it. And little help to live with it day to day. I hired a special education attorney a week later. “We” are still fighting for an appropriate education plan.

    1 in 88. That’s my kid.

    My husband is due home in November, after a 12-month tour. He will be instantaneously thrown into the battle back here at home. No respite, no time to recover from the brutality of the conflict there, just more fighting.

    God bless our troops who sacrafice so much to protect our freedoms. Now it’s time to step up and take care of them and their families.

    • rachel,

      thank you so very much for your family’s service. i can only imagine what you and your husband are going through. i desperately wish i could single handedly change it. since i can’t, i hope and pray that together as a community, as a nation, we will make things better for families like yours. as we do, please know that you have our support, gratitude and prayers.

  4. To add another dynamic I failed to include… we are an Army National Guard family in Connecticut. My husband is Active Duty Reserve, so we rely on the military for our support and benefits during deployments and while my husband is stationed home. However, we do not have access to a military base, or community. Access to services is limited, and staff does not exist in-state to support the programs that are in place. “SBM” certainly made one of THE most important points… does not matter what programs or support exist, if families do not have the stability or proximity to make use of them.

  5. MORE COMMENTS FROM MILITARY MOMS ON DIARY’S FACEBOOK PAGE .. PLEASE READ!

    SBM ~ I think you did a great job of simply bringing the topic up and starting conversation. I am thankful that chose to address it, because honestly the awareness isn’t out there about it. I love your blog, your honesty and your heart. I shared this post on my page and personal blog as well…thank you again!

    WFC ~ I too am fighting two wars. My husband is in the Navy and my 2 1/2 year old son has PDD-NOS. One thing I do have to say that makes everything a bit easier for us is that the insurance we are offered covers quite a bit of ASD therapy. Also, they allow special exceptions for ASD kids so that we can only be moved to certain bases where services are available. For that, and my supportive sailor I am very grateful. :)

    ** REPLY **

    Diary of a Mom ~ SBM, thank you. that means so much to me!

    and WFC, again, thanks to you and your family for your service! i’m so glad that you’ve had an easier go of it so far than many others. we still have so much to do to make it right.

    WFC ~ You are so right there is still so much to do! I also want to say that I love your blog. I look forward to reading it everyday.

    MH-C ~ Thank you for posting this. My son was just diagnosed PDD-NOS and my husband fortunately hasn’t had to deploy yet, but it will happen. Many people think being military we have access to a great insurance program and medical benefits but what most don’t realize is the availability of quality service providers. There was only one occupational therapist that was covered by my insurance and there was a 4 month waiting period to get an evaluation. I’m still in the process of trying to go around that and find someone else to see my son sooner, but that usually means out of pocket costs for us. Anyhow, I really appreciate and thoroughly enjoy your blog. You have such a way with words. I find them to be very comforting in this journey we’re in! ;-)

    WFC ~ I do have to agree with you there Michelle. While I have been lucky with therapies for my son (mainly OT and we are working on ABA), we still haven’t even gotten a firm diagnosis because there is only one Developmental Ped in our area (within 2 hours) and he has a 2 year waiting list. I wish you luck!

    JB ~ The military allows for you to see a neurologist. See one and have them do your diagnosis. It is true that while the military has the ECHO program, it employs barely any ABA therapists so the care is incredibly hard to access. So are the appropriate docs, therapists. Good luck, remember to fight Tricare every step of the way. Read up on your patient rights.

    SRR ~ DOAM rocks!

    **REPLY **

    DIARY OF A MOM ~

    WFC, thank you for your kind words. i’m so glad you enjoy the blog. but holy crow, two YEAR waiting list? that’s insanity!

    MH-C, once again, thank you and your family for your service. we are so grateful! (and i’m so glad the blog is a source of comfort. that means the world to me.)

    JB ~ thanks for sharing the advice – sounds like you know the process all too well.

    and SRR, WBTY? oh, yeah. i did. consider yourself acronymed.

  6. Jess – Thank you. That’s all I can say. This story needs to be told. I’m embarrassed that we treat our military families this way. Thank you.

  7. Thank you so much for this post! My husband has been serving for over 21 years and together we are raising 2 special needs girls (one with ASD and the other is non-verbal.) It is true that military families face special challenges raising our children. With frequent moves, we generally know our children’s therapists better than our next door neighbor. :)
    The one thing that made the separations easier for my girls, was video conference calling. Our ASD daughter is unable to use the phone, but she will talk to Dad on video. I would love to see this type of technology available to all of our deployed troops with ASD children.
    Thanks again for your post.

  8. I just stumbled across your blog. I have an almost seven year old daughter with PDD-NOS. Surprise! I also have a husband in the air force. Thank you so much for your post. Seriously… just… thank you.

  9. Is anyone else asking why the rate for military families is 1 in 88?

    Do they provide some sort of subset that can be examined?

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