We’ve been a military family for 17 years. My husband and I got married the week after he received his first commission, and we were installed in our first post the week after that.
When we had our oldest son in 2002, we had some surprises. He has multiple disabilities and special health-care needs, including a rare structural brain malformation called a type III Chiari malformation, schizencephaly, and hydrocephalus (which requires him to have a shunt in his brain). These have also caused other related neurological and developmental diagnoses so that he needs home health care, equipment, therapy, and special education plans. As a result, we joined the Exceptional Family Member Program (EFMP) when he was born and have been part of it ever since.
We are a family of 5. We have a 10-year-old son with typical development and a 3-year-old daughter adopted from China, who also has hydrocephalus and a shunt.
Through all of these years of being a mother of children with special health-care needs, I’ve learned some key things about finding support for military families of children with disabilities like these.
First: When your family is facing a new assignment, do your own research.
We’ve only moved a few times since my son was born. We moved to Texas 1 month after he got out of the hospital, then were transferred to Washington, D.C., and then we came back to Texas 5 years ago.
We could have moved more often, but getting the right services for my oldest son, in particular, has been tricky. Not just any post is going to have all the therapies that he needs. My husband has been up for some assignments in the past few years in places where we couldn’t get the right services. So, we ended up not going.
When those assignments came up, our EFMP caseworker reviewed files about services and more at the potential new base. And then the caseworker made a recommendation about if we should move or not before my husband was approved for the assignment.
I really had to do my own research on services to back up the EFMP decisions. One location had therapy centers on base that could have worked for my son, but they all had 3-month waiting lists, so EFMP didn’t recommend that assignment. But they did recommend another assignment where the waiting lists weren’t the issue, but my research showed that the therapy centers on their lists were over an hour from base, one had gone out of business, and one didn’t even serve children. The EFMP person wasn’t an expert on my kids’ needs, so how were they to know? When I took my research to EFMP, they changed their recommendation, and we didn’t go on that assignment.
Secondly: When you are moving, get super organized before you go.
Moves go a lot better if you plan out how to take care of your kids’ medical and educational needs in the new place as much as possible before you go. It’s a lot easier to move if you already have your kids’ school and medical records up to date and have identified their new schools and medical care options.
Thirdly: Find experienced people to help you.
I’ve been pretty lucky that TRICARE (the military health insurance program) has covered a lot of the things my son needs, like home health care, therapy, and equipment. Having those services and supplies covered has made it a lot easier on me.
But it hasn’t always been easy. It’s hard and sometimes frustrating to fill out all the paperwork, find the right doctors who are also on the approved lists, and ask more than once to get things approved. I know other families who’ve had to fight tooth and nail for the same services we get.
And I have to say, I think some of my luck comes down to my TRICARE caseworker. TRICARE is really complicated and has a lot of programs that a newer caseworker might not even know about. I have a very experienced caseworker who understands my family’s needs and knows a lot about the different TRICARE programs. I do recommend that other families in a situation like ours ask for a TRICARE caseworker experienced in supporting families of children with disabilities or special health-care needs.
And finally: Focus on the positives.
It can be easy to get overwhelmed with daily life when you’re dealing with the stress of a spouse being deployed, a new move, and finding all the services your children need. I’ve found that it’s important to focus on the positive things about life as a military family.
For example, we really like to travel, and that’s a lot easier when you’re part of the military. And, since you never know how long you will stay on a given post, we like to try to explore everything about a new area. When we moved to Texas, for example, we encouraged our younger son to look for places he wanted to go camping and exploring. It helped him look forward to being in a new place. As much as possible, we try to have regular adventures.
My kids’ excitement about exploring is infectious. Helping them have fun reminds me to take time to have fun too, even with everything else going on. And it helps me enjoy some of the benefits of our life as a military family.
To learn more about some of these topics, see our section on Family Support or our page on Resources for Military Families of Children with Disabilities. You can also connect with other families in your area.
After my daughter passed away, I also lost my own identity and purpose in life. How do you go forward from there?
To advocate for our children, we must be informed and active in the decision-making processes—from local to state to national concerns. There are tools to assist in finding helpful resources.