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Military Families: Let Congress Hear Your Voice!
On January 31, military families will get their chance to tell Congress about the special challenges they face raising children with autism. Many military parents will be in the audience.
But many more will be unable to make it to Washington for the briefing.
Autism Speaks believes their voices need to be heard as well. We are making it possible for these military families to record a brief story about their experiences and upload it to our YouTube page. We will share as many of these videos as possible with Congress, including airing portions of them during the meeting.
Visit our YouTube page to find out how you can participate!
LIVE Chat with Geri Dawson, PhD & Lisa Goring Analyzing DSM-5
Chief Science Officer Geri Dawson, PhD and Family Services Vice President Lisa Goring hosted a LIVE Chat to address concerns sparked by this week’s New York Times article on proposed revisions to the medical definition of autism spectrum disorder in the DSM-5, to be published in 2013. Readers heard about its potential implications for individuals to receive an autism diagnosis and appropriate services.
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Autism Speaks Recognizes Pearl Harbor Day and our Military Families
President Franklin D. Roosevelt’s powerful and iconic speech following the Pearl Harbor Attacks.
As we honor our military on this special day in our nation’s history, the Caring for Military Kids with Autism Act (HR.2288) continues to languish in Congress. Did you know that our service members lose all autism benefits for their dependents once they leave active duty, even if medically retired after being wounded in combat?
The Caring for Military Kids with Autism Act would end that injustice against those who do so much for our country. HR.2288 would make clear that all military members, whether on active duty or retired, qualify for autism insurance benefits for their dependents. Take time today to help our military families.
Write your Member of Congress below and ask them to co-sponsor HR.2288! If they have already signed on, send them your thanks!
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Here is How YOU Can Help: |
| 1) PLEASE ASK YOUR MEMBER OF CONGRESS TO CO-SPONSOR THE CARING FOR MILITARY KIDS WITH AUTISM ACT BY SENDING THEM AN EMAIL HERE. NOTE: We have it preloaded in the system so if your Member of Congress has already sponsored this legislation they will receive a thank you note; if not, they will receive a request to sign on as a co-sponsor. You can take action here.2) SPREAD THE WORD ON FACEBOOK. Post the following suggested message on your Facebook page:“SUPPORT OUR MILITARY FAMILIES! Email your Member of Congress to ask them to co-sponsor the Caring for Military Kids with Autism Act. Military members now lose their autism insurance benefits for their dependents once they leave active duty, even if medically retired after being wounded in combat. Help end this injustice against those who matter most to our country by taking action with your Member of Congress on the link below. Repost. Then write DONE so I can thank you!”LINK TO: www.autismvotes.org/Military Kids |
To learn more about the Caring for Military Kids with Autism Act, please visit our Military Families page.
Please stay alert as we guide the autism community in ways that can help make this a reality for our military families. Let’s serve those who serve us! They have put their lives on the line to preserve our freedom, right to vote and opportunity to approach our political leaders every single day. Their children deserve appropriate coverage.
See how many people YOU can activate to help!
5 Things Every Parent in the Autism Community Can Learn from a Military Mom
Parenting a child on the autism spectrum is challenging enough. Now imagine your spouse’s job involves moving the whole family to a new state every three years – and your spouse gets deployed to war zones for year-long stints, leaving you to hold down the fort at home. Such is the case of many military spouses, including Kristin Proffitt of Colorado Springs, CO, and Kristina Matthiesen of Columbus, Georgia. Relocations, single-parenting, lining up new providers, and building new support networks are topics these women know intimately. Kristina and Kristin were kind enough to sit down with me and share 5 key lessons learned in the past few years that are applicable to most parents of a children on the spectrum. At the end, they also share specific tips for parents in the military.
5 Tips for All Parents
5. Seek Alternatives to Long Wait Lists for Diagnosis – Kristin Proffitt’s son, J.J., was 16 months old when her husband Josh was relocated from a base in Georgia to Ft. Carson in Colorado Springs. “J.J. didn’t take the move well and at 17 months of age, he lost all his words,” explains Kristin. “The wait list to see a developmental pediatrician at Denver Children’s was insane. All told it was going to be about 12 months before we could get a diagnosis. So I looked around and found a private clinic called Legacy Comprehensive Counseling that could get us in within two weeks. I had to do a little negotiation with Tricare (the military’s health plan) to get it covered, but we did it: got the diagnosis, and got J.J. into early intervention services much sooner.”
4. Start Evidence-based Early Intervention Programs - A report of the U.S. Surgeon General states that thirty years of research on the ABA approach have shown very positive outcomes when ABA is used as an early intervention tool for autism. Like many military parents on MyAutismTeam.com, both Kristin and Kristina have ABA providers on their teams to supplement the services their kids receive through their IEPs. While there are still many insurance plans that do not cover ABA therapy, fortunately for these military moms, Tricare does.
- ABA Therapy - Kristina: “When we finally switched to a certified ABA therapist in Columbus, the change could be seen within the first week. A true ABA therapist will pinpoint exactly what your child needs to work on and update their goals often (ours is weekly).”
Kristin: “We met our ABA therapist through parent training and got her to start coming to the house twice a week to work with J.J. We have a great rapport with Kelley. She’s the only therapist J.J. refers to by name.”
- Speech Therapy once a week – “J.J.’s made incredible gains. He’s 3 years old. In November he was just starting to say ‘ball’, but now he has a vocabulary of over 125 words and he’s starting to string together two to three words at a time.”
Speech was also the biggest developmental area for Kristina’s son and the area in which he’s made the most progress.
- Occupational Therapy once a week – Kristina reports, “We’ve been going to the OT for about six months and have seen a great deal of improvement in my son’s handwriting.”
Kristin’s OT focuses on another area entirely. “J.J.’s a ‘sensory seeker’ and a runner with no sense of danger,” explained Kristin. “He crashes into things and people. We have had to put additional deadbolts out of his reach on all our doors to make sure he doesn’t run out and endanger himself. Our OT is helping him with sensory integration.”
3. Don’t Settle With Providers You’re Not Comfortable With and Trust the Ones You Like – Kristin considers herself blessed to live in Colorado Springs where the special needs services and providers are relatively bountiful. “If you’re not comfortable with you pediatrician or specialist, don’t let Tricare (or anyone else) pigeon-hole you into using someone you don’t want.”
She also points out the importance of being open to the suggestions of providers you have grown to trust. “When J.J. went to school I was convinced it would be best if I were to drive him instead of letting him take the bus. Our ABA therapist encouraged me otherwise, saying the school bus ride would build valuable routine into his day and make it easier for me to drop in at school to observe without him assuming it was time to go home. She was right, and it turns out that riding the school bus is the highlight of J.J.’s day!”
2. Incorporate Fun Extra-Curricular Activities into Your Team – Many parents on MyAutismTeam have extra-curricular activities on their teams – from piano lessons to gymnastics to martial arts. Kristina has a Taekwondo gym on her team. “They work on things like listening, following directions, and of course taekwondo skills in a fun environment that the kids enjoy.”
1. Reach Out / Don’t Do It Alone – Having moved cities multiple times and faced extended, stressful periods of single-parenting while their husbands are deployed, both women understand the importance of reaching out for help. “You need to find the emotional support in your community – online or locally.”
- Reach Out Locally: “When you’re moving so much it’s hard to keep putting yourself out there,” explains Kristina who had to move from Texas to Georgia just ten days after receiving her son’s diagnosis of PDD-NOS. “When you have a child that isn’t acting in a socially normal way – it can be even harder to put yourself out there, but you need to reach out. I’m more comfortable around someone who has a child on the spectrum because nothing fazes them anymore! Searching for parents near you on MyAutismTeam is a great way to find other people in your area (military or not) and a place to find new providers. I also turned to the local mother’s club website.”
- Reach Out Online: Despite being separated by 1400 miles, Kristin and Kristina connected on MyAutismTeam when they saw they were both Army Wives. “I definitely try to connect with other military spouses,” explains Kristin. “I can identify with them more no matter where they are stationed or what branch they are in. I can feel more comfortable with them saying, “My husband is deployed” because they instantly knows what that entails. “
(Note: More broadly – we see this trend happening on the MyAutismTeam live feed where geographically separated parents connect to discuss common challenges such as family members blaming autism on “bad parenting”, feeling isolated (another military mom), acting up in school, sleeping problems, feeling overwhelmed by new autism diagnosis, and transition to adulthood.)
Additional Tips for Parents in the Military
Heather Hebdon, Founder of Specialized Training of Military Parents (www.stompproject.org) reports that 1 in 50 children of military parents are diagnosed on the autism spectrum. That rate is higher than the 1 in 110 ratio typically quoted for the United States. The military has been relatively forward thinking when it comes to helping families dealing with special needs. Here are some extra tips Kristin and Kristina shared for parents in the military.
- Sign up for EFMP (Exceptional Family Member Program). The different branches of the military have their own programs. More information about EFMP can be found on the Military Homefront site.
- Enroll in ECHO – Echo is the Extended Care Health Option, a program through Tricare open to people who need assistance above and beyond EFMP. Having ECHO allows you to get coverage for ABA therapy and more. Kristin reports, “Our EFMP case manager at our on post hospital told us about ECHO. J.J. was automatically approved for it since he already had been diagnosed on the spectrum.”
- Become friendly with your EFMP coordinator and the Pediatrician – Kristin: “Get on a very good basis with your pediatrician, particularly if they are on a MTF (Military Treatment Facility) on post, as well as your EFMP coordinator. Dr. Choate, our pediatrician, knows us and knows what J.J. needs. That personal relationship makes your providers want to fight for you. Our EFMP coordinator, Laurie, has been an invaluable resource and member of our team. She knows Dr. Choate and she will talk to him about getting us a referral (like for a speech therapist and OT) when we need it.
- Talk to Tricare when you need another referral or another options. “You don’t have to settle for the first referral you’re handed .”
- Encourage providers you like to register with Tricare so you can continue to work with them and get it covered.
Kristin: “We met our ABA therapist, and OT through the early intervention program in Colorado Springs. When J.J. was about to age out of early intervention, we got both of them to register with Tricare so that we could continue to work with them as J.J. got older. “
- Research New Providers Ahead of Your PCS & Share Your Team for Other Military Parents - Kristina: “I know MyAutismTeam will be really helpful when we are PCS’ing. I will be able to look ahead and see what services are in the area and what people there can tell me about those providers. There’s nowhere else I’m going to get that information, military or not. It makes me want to share my team to help out other military parents who might move to my base.”
You can reach out to Kristin and Kristina on MyAutismTeam.
- Interview Conducted by Eric Peacock, GM of MyAutismTeam. @MyAutismTeam @ejpeacock
In Their Own Words – Meeting My Baby Girl
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.
Honoring our Military Families
Master Sergeant Buck Doyle (USMC, ret.) fought in five combat tours as a Reconnaissance Marine and was severely wounded during his third deployment to Iraq. He is a recipient of the Purple Heart and was awarded the Bronze Star with “V” for his actions on the battlefield. Below is an article written by his wife, Kyla Doyle highlighting their efforts to improve services and supports for military families impacted by autism (originally published in the Coast News on March 25, 2011).
Last summer, after my husband retired from the Marine Corps, we moved our family from my childhood home in Solana Beach to a beautiful little valley in northern Utah, where we are enjoying the seasons and the slower pace.
But now we’re coming back.
On Saturday, April 2nd, Buck and I will get on a plane, and come back to San Diego for a day to run in ACT Today for Military Families’ 5K/10K race to benefit military families with children affected by autism.
I’ve never run a 10K before, but this one’s had me literally training in the snow since January—because the cause is so important to us.
You see, our seven year old daughter, Kate, is among the 1 in 88 military children with autism. But thanks to early, intensive intervention, Kate has gone from a diagnosis of severe autism at the age of two, to being virtually indistinguishable from the other children in her new first grade classroom.
To get there, we have had to wage a five-year battle of our own—with our insurance company, the school district, the state; the people we had thought would be our allies—in order to get Kate the services she needed.
If you ask my husband which was harder: getting shot by a sniper in Iraq or trying to recover our daughter from autism, he’ll tell you it was the latter, not the former.
Through thousands of hours of individual therapy, and an enormous financial and emotional toll on our family, Kate has made progress that we didn’t dare dream for her five years ago. All the while, Buck was fighting the nation’s battles—wanting only that his family—his little girl—be taken care of in his absence.
ACT Today for Military Families, is doing exactly that—filling a gap that currently has many of our military families in crisis. ATMF is helping to meet the immediate needs of families and children affected by this devastating disorder, who are simultaneously under the stress and strain of sending their loved one into harms way.
I am often asked by friends and neighbors how they can show their support for our military—and my answer has always been to take care of their family here at home.
Participating in ACT Today’s 5K/10K run and ONE HOPE Family Festival is a perfect opportunity to provide immediate help to military families and who are challenged even more than most—Buck and I invite the San Diego community to join us on April 2nd – in hopes that Kate’s success can be had by other children, and the road to that success can be made smoother by our efforts.
Semper Fidelis.
For more information on how you can help or to register to run in the ACT Today for Military Families 5k/10k, go to www.acttodayformilitaryfamilies.org
Breaking Through the Glass Ceiling
Marine Corps families meet with Mrs Michelle Obama on June 13, 2010 at Camp Pendleton, Calif. GSgt Lynnette Glover, Rani O’Donohue, First Lady Michelle Obama, Karen Driscoll Cindy Farnum, Liz Tashma, Bernadette Jarosz
This guest post is by Karen Driscoll, who is a Marine wife, mother of three (one with autism) and ACT Today! For Military Families Campaign Director.
The expression “Warrior Mom” is often used throughout the autism community. It is a badge of honor describing the battles mothers have engaged in to help their children experience the opportunities in life every child deserves. As Warrior Moms, we put our dukes up to fight for care and treatment; we work diligently to educate and build awareness within our communities, and we mentor and support others along the journey. We are fierce. We are wise. We are compassionate. We are Mothers.
“Warrior Mom” takes on a whole new meaning when put in the context of the military family impacted by autism. The military family wages a battle on two fronts: one for our country and another for our children. As a Marine wife and a mother of a young child with autism, this is very personal. I understand all too well the challenges autism brings to the military family and I have become a vocal advocate for our children with special needs.
I work alongside several other military spouses (across all branches of service) who have children with autism, to raise awareness of the challenges that military families with special needs face. Our mission is to enhance the quality of life for military families with disabilities and special healthcare needs by advocating for the medical necessity of evidence-based treatments and other much-needed family supports and assistance. Working toward comprehensive policy and legislative reform is never an easy task, especially when putting things in context of the Department of Defense or the Senate/House Armed Services Committee.
The statistics are staggering. One in 88 military children has a diagnosis on the autism spectrum, and less than 10 percent of these special children are receiving recommended care and treatments. This is why First Lady Michelle Obama met with Marine Corps families at Camp Pendleton recently to discuss policy reform and to work toward improving services and supports for military children. I was fortunate to be part of this important meeting with the First Lady and witness what another Marine wife described as “the opportunity for parents of children with autism to break through the glass ceiling” and reach key individuals who are in a position to resolve many of the issues our families face.
Mrs. Obama listened as parents highlighted the challenges military families with special needs experience to access appropriate care and treatment services through TRICARE, the health insurance system for members of the U.S. military. Families impacted by autism discussed the tremendous emotional and financial strains caused by the limited services under existing TRICARE programs and emphasized the importance of improving TRICARE coverage of autism care.
“My goal is to help the rest of our country better understand and appreciate the incredible service of you and your families, and to make sure your voices are heard back in Washington and that your needs are met,” said Mrs. Obama. “I am launching a national challenge to Americans to find ways to rally support of the military family. One percent of America may be fighting our wars, but 100% of America needs to be supporting parents in that fight.”
I am humbled by the First Lady’s commitment to the military child. Military families shoulder significant responsibilities today and make tremendous sacrifices few can fully appreciate. Military families impacted by autism have additional stresses as they cope with extraordinary circumstances and limited treatments our precious children urgently need and deserve. Autism is treatable, and with treatment our children can make significant gains, but funding for these vital services is limited and often elusive for the military family. I echo the First Lady’s challenge to America to please support military families who have sacrificed so much and I ask for your particular attention to the unique needs of military children with autism.
In the words of First Lady Michelle Obama, “We’re working to be an America where more people not only understand the service and sacrifice that [military] families make, but where more Americans take action to help lighten your load.” Military families deserve the quality of care equal to their heroic service and sacrifice in defense of our nation, our people, and our freedom.
Semper Fidelis.
To learn more about legislation and policy initiatives for the military family affected by autism, please visit www.autismvotes.org/military.
ACT Today! (Autism Care and Treatment Today!) is a non-profit organization dedicated to providing funding to families that cannot afford or access the treatments their children with autism need. It was founded by Dr. Doreen Granpeesheh, a renowned expert in the field of autism and Applied Behavior Analysis. Through direct donation, corporate sponsorship, and community generosity, ACT Today! is changing the lives of children TODAY. Recognizing the extraordinary challenges military families impacted by autism experience, ACT Today! has launched ACT Today! for Military Families a fundraising campaign benefiting military children with autism to help defray out of pocket medical costs. For more information on how to help a military family impacted by autism, go to: www.acttodayformilitaryfamilies.org.
In Their Own Words – Finding the Right Words
This “In Their Own Words” essay was written by Rose Wade. Rose has two children, including a son with autism. She is a military wife and the founder of The Robin Hood Lego Campaign Advocating Autism Awareness and Lego Therapy.
Our home is often held together by words both written and spoken. When my son first said “mama,” it brought tears of happiness to my eyes. There are words of encouragement and correction I’ll give to my children until I’m old and grey. Or older and greyer than I am now.
We’re a military family. My husband has been apart from us many times. From brief two-week temporary duty assignments, six-month deployments to Iraq and Afghanistan, and now a year-long remote tour in Korea.
The time allotted to him for moral calls to us is free, but brief. Our family has fifteen minutes to cling to each others’ voices. Every word spoken is precious. We save letters for birthday, anniversaries, and holiday cards. There are several, ribbon-tied envelopes from years of correspondence tucked away in the closet.
My 12-year-old son, Matthew, was diagnosed with high-functioning autism. Though I still haven’t been able to encourage him to write a letter to his father, I love every minute of listening to him chatting on the webcam during the few instances when my husband can be away from duty.
Matthew will talk endlessly on several subjects and they’ll all string together. One word or phrase will remind him of something else he saw or learned, and the talking will continue.
His talking is also filled with questions. I never know where I’ll be, or what I’ll be doing when I’ll be asked a question about the formation of the sun, and two seconds later be asked why the mail doesn’t run on Sundays.
I do what I can to keep up with the questions. I’ve had to search my own ‘files’ for the appropriate answers. I’ve often had to reply “I’m not sure.” It’s a good thing I’m not a contestant on ‘Jeopardy’. I’d owe money to Alex Trebek.
My 10-year-old daughter, Kayli, asked Matthew why he’s always so talkative in the car. I didn’t notice it myself until she pointed it out. While I’m driving and answering Matthew’s questions, I must look like I’m talking to myself or singing with the radio. So far, I haven’t been pulled over by the security forces on base because they thought I’ve been on a cell phone.
Matthew speaks often. Sometimes it wears on my patience, but I do my best to give him answers even if I have to often gently remind him that he had asked me the same questions yesterday. He’s talkative, but I wonder how many of my responses are getting through to him. I’ve spoken to him about several subjects, several times. But I know I’ll be asked again next week.
Thanks to the inspiration of a talented man, I found a passion for creative writing. It has given me a new creative outlet that helps me cope with my brave husband’s long absences that leave me to deal with daily fears about his safety, my darling son with autism, my social butterfly daughter, and household appliances that only cause trouble while my husband is away.
Inspiration was given to me again, by the same talented man, and led me to start The Robin Hood Lego Campaign Advocating For Autism Awareness & Lego Therapy. My writing has found another, important outlet. My hope for the campaign is to educate others about autism by expressing my experiences with a child on the spectrum.
My son has high-functioning autism. He comes with his own challenges and triumphs. There are children across the varied autism spectrum, each with has loved ones who search for ways to cope with the effects of autism on the child, and on the family.
Sometimes words are too repetitive, too harsh, not clear enough, filled with impatience. Sometimes the right words are simply missing.
I worried over my first blog post about autism entitled “How Would You Know If a Fish Had Autism?” Would people want to read it? Would they understand my point-of-view?
The blog post received comments from mothers of children with autism, paraeducators, and adults with autism. Their heartfelt words touched my own heart and reminded me not to give up my campaign to raise awareness of autism and its effects on families.
I listen to the words and questions spoken by my son and I learn more every day about him, and about autism. Just like my son’s words to me, the words I share with others about autism may not always be the right ones, or understood, or relatable to everyone, but they will always come from the heart.
“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.
