By Sarah Stockwell
Summer is almost here, which for almost all families with a child on the autism spectrum brings up the question of how to ensure your child has enough activities planned to keep life as consistent as possible. We are all told how important consistency and predictability are for children with ASD, but, for many thousands of military families with children with autism, the summer is often anything but consistent. For a significant number of military families, summer, means relocation, or PCS (Permanent Change of Station). Military families can move locations anywhere between every 1-5 years, depending on the branch of service, rank and career field of the serving member.
As a military family ourselves, since our son was born we have lived in 3 states. He is only just 6 years old. We moved states within weeks of our son being diagnosed at the age of 2 and are in our 4th house in 6 years.
Upon being told consistency, routine and predictability were important, I considered our lives. It just wasn’t an option for us. So, I resolved to do exactly the opposite. Our son would have to learn to live with the uncertain and so I regularly sabotaged our plans, or scheduled things so they wouldn’t be quite so fixed as to cause a problem. Luckily (?!) it worked well and we have a child that can ‘roll with the punches’ and handle a change in his expectations. It’s one thing off our list anyway.
There is estimated to be over 20,000 military dependents with autism, which is a huge number, and often families have more than one child on the autism spectrum.
For those who don’t move regularly, consider the services your child receives – occupational therapy, speech therapy, ABA therapy, which might all be through different providers.
Now consider your pediatrician. How many pediatricians have you seen? How many have you ‘fired’ because they wouldn’t consider you an equal partner in your child’s care or take seriously your reticence regarding vaccination? How many specialists does your child see? How long did it take you to find doctors you are happy with?
For military families PCSing these are only the first of many considerations. They have to find local providers who not just take Tricare, the military health ‘insurance’, but also have capacity to treat their child at prescribed levels.
Once medical and therapy providers are found, the family has to re-establish referrals for all of these so that evaluations can be scheduled. There are regularly several week waits for each of these and they must be completed and authorizations obtained before services can actually begin. In all, a military family can expect a break in services for anywhere between one and four months before their child can pick up where they left off in each of their therapies and there is often regression and loss of skills during the stressful time of a move. Specialist appointments can have a delay of up to six months.
None of this sounds all ‘that’ horrific, right? I mean, even civilians move, yes? But, when you’re repeating this process every 1-5 years, it’s becomes a major barrier to care for your child and an obstacle to progress.
We had an assignment in Alabama for just 11 months. We were extremely fortunate to be able to locate an ABA provider that could start therapy with our child within 4 months of us getting there, but, given our short assignment, we only received 7 months of therapy in that period and we were extremely fortunate to get that. We never received OT or Speech therapy. Then, not only did we move states, but we moved Tricare ‘regions’ so every piece of paperwork on our son had to be re-done.
Wouldn’t it make sense to ‘homestead’ some of these families? In a perfect world, yes, but only one service has this option for the most serious special needs cases (Navy) and for the others, it’s often simply not possible to continue a servicemember’s career progression at one location. The military likes to expose the member to as many different organizations and job functions as possible, in order to develop their skills and the servicemember needs this broad base of experience to maintain their competitiveness for promotion. In our case, not being able to attend that 11 month program in Alabama, (which was a competitive professional military education opportunity) would’ve had significant implications for my husband’s career.
The next major hurdle for military families is that of school provision. In Alabama it was routine for parents to use the many private schools in the area, because the public schools are considered so substandard. Sadly, many private schools can simply not accommodate special needs children, leaving the families with no choices. We ourselves used a private preschool and used our ABA benefit to have our ABA tutor work with our son in the school setting. Without this, they would’ve been unable to accommodate him.
When our son turned 3, we started the IEP process and had to fight for an IEP for a child who had been diagnosed, not one year prior, with autism at a moderate to severe level. We needed that IEP to guarantee him a place at preschool in our next state, Colorado, since we received our PCS ‘orders’ too late to apply in the normal entry timeframe for preschool.
I’ve used Alabama as a particularly bad example. School districts often refuse to provide comparable services to military children on IEPs, regardless of the law, simply because they know those families have limited funds to retain legal services and they move often, so families are unable to stay long enough to reap the benefit of any victory or improved provision. The military provides no assistance in cases like this and families are left to represent themselves, or obtain advocates at their own cost.
Imagine having a fantastic school placement for your child, with supportive staff and teachers who are really engaged with your family and your child is thriving. Then your spouse gets move orders and it’s to a location where the incoming school district simply states that your child does not need all the services listed on their IEP and refuses to provide it. Their staff simply aren’t trained properly and their district has a budget problem. That then becomes YOUR problem. That’s a scenario that all too often affects military families. It’s heartbreaking to leave an area where your child is thriving for an area where you have already heard horror stories about, but, ‘on paper’ the area can support your family, so off you go. How much talent does the military lose every year because the family simply can’t obtain what they need for their child and instead decide to separate from the military?
Then, we roll onto vaccination exemptions. They vary around the country and when you’re a military family, you have to comply with the state laws of the state you’re assigned to, not necessarily the state you’re considered a resident of (military families often have a home state for tax and voting purposes, but live where the military assigns them). Even the regulations for a religious vaccine exemption differ between states and these are things that need to be in place before your child can attend school.
Lastly, for this discussion, but not least, we have the social aspect. Autism, as we all know, is an isolating condition for a family to live with. When a military family moves, it’s not just the kids who have change, but the parents. The servicemember has work colleagues already in place and might even be working with people they’ve previously worked with, but the spouse will often have no-one. A military lifestyle, coupled with a special needs child often precludes the non-serving spouse from obtaining employment, let alone continuing any form of career, and thus the isolation factor is multiplied. A stay at home parent often spends so much time ferrying a child between therapy appointments and school that little time (or energy) is left for socializing. Family is hardly ever near and help is hard to come by.
There are some grassroots efforts to assist military families in their transient lives, such as American Military Families Autism Support (AMFAS) who have both local groups and are developing a worldwide database containing everything from therapy providers to natural grocery stores in an area. (www.facebook.com/militaryautism or www.amfas.org)
Families who live this military lifestyle need to be proactive and resourceful. They need to be pushy to obtain timely services, which can be complicated by the rank aspect of the military. It can be a challenge even for seasoned spouses, who are most often the parent managing the special needs child’s care.
Military families manage so much, including deployments and separations, but many consider the constant relocation to be the biggest headache, even before throwing a special needs child into the mix. Military families stand up for freedom, but many face a larger conflict on the homefront than on the battlefield.
Sarah Stockwell is a former chemical researcher turned stay-at-home parent. She lives in Colorado Springs, Colorado with her husband Jeff, a Lt Col in the United States Air Force and their son Tom, who was diagnosed with autism at age 2. Together they work towards recovery whilst enjoying the beautiful Colorado outdoors. Sarah has written for The Autism File magazine and enjoys stained and fused glass art.