Thursday, November 17, 2011

So Far Away

It was just a phone call.  But it opened my eyes to so much more.

My husband is away on a business trip.  It's not his first one, but it's the first time he's been away for longer than a few days.  We had prepared the boys as best we could - showing them where China is on a map, tracking his flight on the iPad, and counting down the number of "sleeps" until Dad is home again.

My oldest and youngest seem to be doing okay with it.  It's clear they miss their dad, but they are understanding that it's temporary and he'll be home soon.

My five year old?  Not so much.

He's having a hard time.  Very hard.  It's coming out in his behavior at school and his sleep problems have returned. 

In his head, mom does certain things (fetches juice and goldfish and gives squishy hugs) and dad does other things (runs around the house with him and makes hot wheels tracks).  The two cannot mix.  And no social story, or pre-teaching, or anything else can help him reconcile this.

Two nights ago, he was talking on the phone to my husband.  Begging him to come home.

"Just tell the pilot to bring you home now.  Why can't you transport yourself here?  I miss you, Daddy."

I got back on the phone with my husband and I could hear the pain in his voice.

"I don't know how J. does it, being away from your kid for so long.  It's hard enough for this week.  I can't imagine being deployed for a year or longer."

J. is my friend's husband who is currently deployed in Afghanistan.  He's serving our country while his wife and her young son are home. 

Right then I knew we had to do more to support them and families like them.

You see, while my husband is away for a week, I have all the supports at home.  His insurance covers home ABA therapy, so my son's therapist has been here three out of the eight afternoons that he's been gone.  My son is in a full day kindergarten program with a one-on-one aide.  I have family and friends here to step in the moment I need them.  I can talk to my husband every night and day on the phone and e-mail and text with him during the day.  My kids can see his face through pictures and skype.  For free.  My husband doesn't have to worry that our doctor's bills are not getting paid, or that we're skipping a therapy session because we've run out of money.

I don't have to worry that my husband might not come home.

Our servicemen and women - and their families - don't have that luxury.

We need to fix that.

The Office of the Secretary of Defense for Health Affairs indicates that 1 in 88 active duty military children is diagnosed with an Autism Spectrum Disorder (ASD). Combined with retiree dependents, there are 22,000 military kids with autism. The number is probably much higher than that.

Currently, the military insurance (TRICARE) 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.  This essentially limits the number of hours per week to less than half what is typically recommended for a young child newly diagnosed. Months to years are lost navigating through these processes. (from the website Caring for Military Kids with Autism Act)

Does that sound fair?  Does it seem right that the people who are putting their lives on the line for our country can't count on their children getting the help they need at home? 

It doesn't to me.

Currently, there is federal legislation pending that can help our military families get the supports they need. 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.

But the bill is buried in committtee and lacks the support needed to get it out to a vote.

That doesn't seem right to me either.

So what can we do?

We already know that as a special needs community, every voice matters.  When parents, grandparents, aunts, uncles and friends speak together as one voice, things get done.

This needs to get done.

Visit the Caring for Military Kids with Autism Act official website at  Check the list to see if your Congressional representative has already signed on as a sponsor. 

If not, send them a letter and ask them why not.  Sample letters are available HERE.

If they are, send them a thank you letter and remind them why this bill is so important.

And give them a call too.  Make it personal.  Give it your voice.


It would be nice if there was some special needs bank.  When you're given your diagnosis, you're handed an ATM card.  Take out what you need for therapy, services, help and hope.  Coverage for vital services for our kids shouldn't depend on where you live, or your income, or your job.  All of our kids deserve to get the help they need when they need it.

And most certainly, our servicemen and women and their families need it now.

Let's show their kids that we support them here when their moms and dads are so far away supporting us.

"So far Away
Doesn't anybody stay in one place anymore?
It would be so fine to see your face at my door
Doesn't help to know that you're just time away
Long ago I reached for you, and there you stood
Holding you again could only do me good
How I wish I could, but you're so far away
" - So Far Away by Carole King



  1. Alysia,
    You may think it was a small deed you have done here, but please let me tell you how huge this is when passion and voice are combined to raise awareness. Thank you. Just one more letter, one more phone call, and maybe one more cosponsor to CMKAA means so much. We see a glimmer of momentum now and this act of kindness to spread the word about our military families living with autism is exactly what we need. We need to pay it forward. We need to take that two minutes and tell our government that this is not right - that our soldiers and their families deserve our support. They deserve to be cared for.
    Bless you, Dear Friend. Thank you.
    Rachel (a.k.a. Mrs. Sergeant Major)
    Wife of CSM William W Kenyon, 1st BN, 102 IN (MTN) CTARNG

  2. Dear Alysia,
    As a Marine Corps wife and mother of a son with autism, thank you for raising up the needs of our brave families.
    Military families shoulder tremendous responsibilities today. My husband is currently deployed for 1 year (4 months down...8 to go). Add autism to the the stress and strain of the typical military family, and you can imagine the extraordinary challenges I face daily. I point this out not because I'm looking for sympathy, I put it out there to inspire America to help lighten the load and help make a difference.
    Just as Americans needs our military families to serve and protect this great Nation, we need you here at home to help support us in that mission. I encourage readers to recognize that appreciation is more than just a kind thank you. It is "engaged citizenship". Take action to help support some of our most vulnerable military families today. Call you Congressman and ask they sign on to co-sponsor HR 2288.
    Thank you, Alysia. You are a great American.
    Semper Fi,
    Karen D. - Marine wife, mother of 3 (one with autism)

  3. As a military spouse who has endured multiple deployments I am cheering in my seat. Thank you so much for acknowledging the sacrifices our service persons. The toll the last 10 years has taken on military families has largely been ignored by the MSM. As an educational psychologist supporting families of special needs children, it has been especially hard to watch them struggle. You made some very good and needed points. Thank you again.

  4. I can only echo what's already been said here. I'm not looking forward to our next deployment (because it's not if, but when) because both boys will be old enough to have a basic understanding of what's going on. I'm thankful I have supports in place and the military covers what it does (after you jump through hoops of fire), but more needs done. Only our active duty kids are covered. We have soldiers now struggling with the upheaval of moves, deployments, etc. and having services for their ASD kids, or retiring and having day to day stability, but losing services like ABA therapy and respite care. It's really a no win situation.

  5. Indeed it is a sacrifice, for the whole family. Though my husband is not in the military, I know many families experiencing the stress and difficulty of unaccompanied tours, and that only becomes more challenging with special needs children. I hope I'm as strong as these parents when it is our turn to face this challenge.

  6. Just wanted this am to pray for you each,Nina Seidman

  7. thank you so much for this, my friend.