Did you see that family at the Washington D.C. Capitol Building trying to take a picture with the kid that kept screaming, “We’re all going to die”? Well, that was us, the Bautista family. We may seem like we have it all together, but we are one meltdown away from complete chaos.
Do you know what it’s like to have a child that needs special care but your duty station doesn’t exactly meet the exceptional care guidelines you were hoping for? That’s my journey, struggling to find a happy medium between a good duty station and proper medical care for my child. The choices are already limited.
I am always hopeful the Army’s decision to relocate us is what’s best for everyone. Usually, we get either a great post and mediocre medical care or vice versa. But hey, just look at it like this, in another three years we get to play this game again. “Yay, we love transitioning!” said no special needs parent ever! Unfortunately, the disconnect between actual Tricare ECHO services, EFMP programs, and HRC has often created a less than positive experience for many families when PCS’ing.
A journey to motherhood
I’m Marla, an Army wife and autism mom. My son, Junior, is the coolest, most clever, autistic kid you’d ever meet. He was diagnosed at the age of two with Autism Spectrum Disorder and Sensory Processing Disorder.
In 2010, after a relatively easy pregnancy and a yearlong deployment for my husband, we welcomed the most beautiful baby I’d ever seen. I was in love. He was perfect, and I was finally a mom! After two miscarriages and a myomectomy, I never thought this day would come. But, it did, and my rainbow baby was here. Junior was a normal infant, breastfeeding about 24 hours a day, that’s normal right? He did all the things babies were supposed to do, at the age they were supposed to do them. He rolled over, sat up, crawled, and began standing all in what the pediatricians called a ‘normal’ developmental pattern.
In 2011, when my family was living abroad, we noticed Junior had trouble eating. In the past, we chalked it up to him being a picky eater, but he was older now and his food preferences hadn’t changed. He had a hard time eating solid foods, especially meat. He would regurgitate it every time it was offered, and I became a little concerned when he wasn’t gaining weight.
‘No longer checking yes’ on the medical forms
During his 18-month checkup, after filling out the redundant developmental milestone paperwork, I realized I was no longer checking yes to everything. He wasn’t making eye contact, pointing at things he wanted, or throwing a ball. Though, throwing a tantrum was something he accomplished with ease. Don’t believe me, ask our church’s watch care providers. The primary pediatrician referred Junior to a developmental pediatrician for further testing and to a program called EDIS (Educational & Development Intervention Services).
As we waited for our initial appointment, I grew worried. I didn’t understand what was happening and I became overwhelmed with stress. I was receiving medical referrals, packets of medical questionnaires, and so many other things I did not fully comprehend. We lived in a location that was being eliminated so our services were minimal, at best. After a few weeks, an EDIS representative came to my home to conduct an evaluation on Junior. I was excited, but also nervous because I wasn’t sure of his capabilities. They suggested we get started with speech therapy and said we were entitled to a respite care provider. She not only helped my son, but she helped me better understand the medical process he was undergoing. Junior was then enrolled in the Exceptional Family Member Program (EFMP).
Limited medical resources
Fast forward two duty stations, and our family is now stationed at Fort Drum, NY. This place is a logistical nightmare for any person with a child like mine.
His developmental pediatrician is located about two and a half hours from our home. His psychiatrist’s office is here in town, but the doctor himself, we’ve never met personally because he’s located in Naples. He sees my son through Skype, which wouldn’t be so bad if I didn’t have an autistic child who has a hard time verbally communicating his needs, wants, or other issues. I don’t feel comfortable with a doctor prescribing meds when he cannot effectively interact with my child.
He also goes to therapy five days per week, which of course is difficult, but the therapy center he attends does go above and beyond in their care. They have truly been an advocate for him throughout our tenure here.
Become a voice
Over the years, I’ve learned that I am my son’s best advocate and conducting my own research can sometimes help, but often results in more questions than answers. My son is okay. Yes, he has autism, but he’s fine. Plus, he’s an Army brat so resiliency is kind of his thing. If you have an exceptional family member, be their voice. Yes, you may be lucky and move to a duty station that encompasses everything your family needs. If you don’t, advocate, ask questions, and don’t be afraid to ask for more than one medical opinion.
Add this to your PCS checklist
- Check out your installation’s MEDDAC website for more information about the health services offered at your post’s health clinic.
- Do a little research on your new duty station’s EFMP program.
- Call local medical offices and find out new patient in-processing wait times.
- Hand carry hard copies of EFMP Paperwork, IEP’s, and other pertinent information that may be immediately needed upon enrollments in schooling or other programs.
If you need help, call or stop by your local Exceptional Family Member Program office. They can help you fill out paperwork and even explain some of the processes you may incur during your move. Ask questions. Make sure the services your military dependent needs are available in a reasonable timeframe. It’s not easy, but do you know what’s harder? Living for years, in a place where your dependent cannot receive proper medical care.
It can’t hurt to be prepared, but it can hurt if you’re not.
“We have no special needs children. Just children… with special needs”. – Uwe Maurer
