The social network for parents of kids with autism

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

Kristin and JJ

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!”

Kristina and her son

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.

  1. 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.  Another great site for military parents is Operation Autism run by the Organization for Autism Research.
  2. 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.”
  3. 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.
  4. Talk to Tricare When You Need Another Referral or Another Options. “You don’t have to settle for the first referral you’re handed .”
  5. 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.
  6. 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. Follow on Twitter: @MyAutismTeam @ejpeacock

Comments on: "5 Things Every Parent in the Autism Community Can Learn from Military Moms" (1)

  1. I love your post! Navigating the special needs system is difficult but I think navigating the special needs military system is even more so. I have only had patient who fit in this category and I felt horrible because I didn’t know how to help or where to point her. I wish I knew of this blog/post earlier.

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