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Posts Tagged ‘Caring for Military Kids with Autism Act’

Military Families Tell Their Stories at Congressional Briefing

January 31, 2012 12 comments

Military families finally got their say before Congress today about the injustice of losing autism benefits for their children when they retire, even when due to being wounded in action. More than 100 members of the military and their supporters jammed into a Capitol Hill briefing today to talk about the special difficulties military families face caring for children with autism.

Hosted by Sen. Kirsten Gillibrand of New York and Congressman John Larson of Connecticut, the briefing also provided military families an opportunity to explain how they lose autism benefits once they or their spouse leaves active duty because of the current operation of the military’s TRICARE insurance program. A bill now before Congress, the Caring for Military Kids with Autism Act (HR.2288), would right that wrong by assuring that members of the military, regardless of their duty status are covered

 

Stuart Spielman, senior policy advisor and counsel for Autism Speaks, said many of the challenges faced by military families “do not have simple solutions.  There are good and bad school districts for special education.  Moving from one place to another may mean going to the back of a waiting list for Medicaid or some other program.  With access to behavioral treatments like applied behavior analysis, however, there is something we can do right now,” he said, in urging support for HR.2288.

Military members and their spouses at the briefing spoke of the difficulties they face accessing care and sufficient treatments for their children while on active duty, and their fears of losing all autism benefits when they retire.

Rachel Kenyon, the wife of a Connecticut Army Reserve platoon sergeant, related how her husband learned that their daughter had been diagnosed with autism while he was on his second tour of duty in Afghanistan.

“‘What does that mean?’ he said. ‘Please. Please tell me that she isn’t going to fall down the deep dark hole of autism.’  But I had no answers for him. I had no hope to offer.”

Jeremy Hilton, a Navy veteran whose wife serves in the Air Force, explained how frequent redeployments  and being stationed in areas with few available providers frustrated their efforts to provide care for their daughter.

Karen Driscoll, the wife of a Marine Corps helicopter pilot with 27 years of service, questioned how members of the military can focus on their mission when worried about uncertain care for their children with autism back home. “Our family is in debt because of TRICARE limitations on ABA therapy,” she said. “We are struggling. And my husband is a Colonel.”

Geri Dawson, Ph.D., chief science officer for Autism Speaks, provided background about autism, the rapid rise in prevalence and the special challenges faced by military families. “Studies show that…families of children with autism experience high levels of stress. For military families, this is compounded by the stresses associated with their service. When one parent is on active duty, the other may be facing these responsibilities alone. When a parent returns from active duty, their families may have the additional challenges of a parent with service-related mental or physical health problems.”

Leading up the briefing, Autism Speaks reached out to the military community to submit their stories by video. You can watch these compelling stories below. In addition, many others posted their comments through Facebook or in reply to blogs.

“There is almost nothing more stressful than the combination of military life and a child with special needs,” said Melanie Pinto-Garcia.

Janice Allmann McGreevy, posted: “The government needs to understand that our heroes are not automatons. They are subject to emotions. They need to be supported, and that means knowing that their families are not fighting nonsensical battles here at home.”

You can help our brave members of the military. Ask your Member of Congress to support the Caring for Military Kids with Autism Act here. To learn more about military families and autism, visit the Autism Votes Military page here. Read more about this issue from the Huffington Post.


Ask your Member of Congress to support the Caring for Military Kids with Autism Act here. To learn more about military families and autism, visit the Autism Votes Military page here.

In Their Own Words – Meeting My Baby Girl

July 21, 2011 17 comments

This is a blog post by Rachel, a military wife and mother of two children. Her daughter RM was born with a 4q Deletion and has an autism diagnosis. Rachel was part of the ‘Light the White House Blue for Autism‘ campaign and has a blog,’Welcome to StimCity.’ 

Finally.

It was the longest wait of my life in that Recovery Room, but I was finally brought to a private maternity room on the floor.  Within minutes, a nurse was wheeling in my beautiful baby girl.  As she passed RM to me –I can still feel the sensation – my heart swelled with a new kind of love, one that would carry me through a journey I had never guessed was coming.

It would prove to be a day filled with mixed emotions, most of which I was unable to recognize at the time.

I can recall purposefully not looking at the pinkie finger.  Instead I studied every other inch of her.  I can also admit that her overlapping toes were undeniable.  However, it was far easier at the time to believe that any kid who had spent the last several months literally sitting on her toes would be a bit scrunched up in that area.

But then there was the matter of her very tiny, nearly non-existent chin and very tiny mouth.  She couldn’t latch on to my breast to feed and after failing to breastfeed my son, I really wanted to find success this time around.

It was a no-go.  She just couldn’t do it.

The nurse came back with a bottle and after several attempts at that - long periods of sucking that barely drew a drop from the nipple - panic was beginning to set in.  She would cry of hunger, but the cry was a sound I had never heard before.  Muffled.  Like there were cotton balls in her throat.

Where the hell was my husband?  Why was I sitting here all alone with this baby and getting nowhere, having no answers and feeling that I was sinking into a dark abyss.  Call it denial, postpartum exhaustion – whatever – but I was not bonding with this child.  Instead I was terrified.

I don’t remember much of that first afternoon into evening.  It would be 24 more hours or so before my SGM made it to the hospital.  In the meantime I was alone.  I had sent RM to the nursery so that I could rest.  But in reality, I think I had done so because I was unable at the time to process that my baby’s entrance into this world was a far cry from joyous.

I only needed to make it through that night.  Then I would see my soldier again.  And he would make everything alright.

The next day, when my SGM walked into my room, my world was whole again.  He would prove to be the strongest, most faithful soul I had ever known – from that first moment he held her, he knew in his heart RM is perfect just the way she is.

A soldier who commits his life to serving our country innately possesses certain qualities that few of us civilians can fully understand.  SGM has never faltered in his belief that even when the mission is critically compromised, remaining steadfast and courageous can still get the job done.  Failing to follow through is not an option.  He has applied those same principles to RM, and in doing so has taught me to keep fighting.

If you haven’t done so, please support the Caring for Military Kids with Autism Act – HERE

We cannot change the world without first being the change we seek.

Thank you.

Love,

Rachel

For more on Military Families and Autism Advocacy please visit Autism Votes

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

 

 

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