Friday, June 7, 2019

When Military Life Doesn’t Work For Your Child With Special Needs

After seven moves in ten years, here we are.  Moving into a neighborhood that we have carefully sought out.  Moving to a city in which we are near family.  Moving to a school district from which our kids will graduate.  And, finally, moving to a state with adult services that can support our special needs child when we are gone.  Our last PCS.

I have heard a great deal being said about special needs families in the military.  I have heard we use EFMP (the Exceptional Family Member Program) to cherry pick assignments.  I have heard we try to bypass EFMP to continue getting needed assignments.  I have heard there are a higher percentage of kids with special needs in the military population, with little explanation or research as to why that is the case.  I have heard my child is a burden on a system lacking medical expertise and funding.  I have heard our service members stay in just for the health insurance our special needs children desperately need.  I have heard our service members get out and use their family as an excuse as to why they couldn’t keep going.

I can’t speak to all of that and I certainly can’t speak for all special needs military families.  I can speak for our family and for myself.   I can say this life has been unnecessarily hard on my special needs child.  Our son is eight and we are going on our fifth school district; our fifth determination of eligibility for special education services and our ninth IEP. 

Over the years we have not used EFMP to get ‘good’ assignments.  We have done everything in our power to keep checking boxes so my husband’s career could progress.  For many of us that means researching areas and finding providers that will work that the EFMP office may not be aware of.  It means sucking it up for a year in a school district that cannot or will not meet your child’s needs or follow federal law.  It may mean living apart for a year, or two, or three so your spouse’s career can keep progressing while your child can keep some semblance of stability and proper care.   It can mean homeschooling when the Air Force’s War College is located in a state ranked the worst in the country for education, and from personal experience the worst in the country for special education.

I think this is typically the point at which a multitude of keyboard warriors say, “Military life clearly doesn’t work for your family’ or “You signed up for this and knew what you were getting in to.”

Did my spouse sign up for the military?  Yes.  Did I marry someone I knew was a career military man?  Yes.  But we did not sign up for this. 

We did not sign up for a disabled child that would need to stay in one state long enough to get on a Medicaid waitlist.  We did not sign up for a child whose educational needs are so significant that some public schools cannot safely accommodate him.  We did not sign up for regression and mania and mental breakdowns with every move.  And my husband, who had already been in the military 16 years when our son was diagnosed severely autistic at three years old, certainly did not sign up for a life in which moves and deployments could set back years of progress for our son.

While we didn’t sign up for a child with special needs, we wouldn’t change it and he blesses us every day.  Naysayers would be right about one thing, though.  Military life (as it currently operates) does not always work for a family like mine.  We have made it work; sometimes to the detriment of our child, when the therapy and psychiatric waitlists are longer than our eleven month assignment.

And for families like ours the choice to stay or go is not always so black and white.  Some of our service members retire well before their careers would be over to give their special needs child a forever home and some certainty.  Some separate for the stability and to be closer to family for help and hope to God they can afford healthcare for their child with preexisting conditions in the civilian world. Some choose to stop checking the boxes and request stabilization, often knowing they are kissing their careers goodbye.  And some keep going, picking up the broken pieces with every move or working ten times harder so their child will thrive.  Military parents of special needs children do not always feel like they can continue serving their country and their children’s needs simultaneously.  Every new assignment and every additional year can feel like a choice against your child.  It can feel like another year or two that they are set back on waitlists for needed services.   

Had my spouse kept climbing the ladder, we looked into the future and saw not one or two more moves, but at least three.  And probably another remote and a possible two years of living apart.  And at least another four years before our son could get on a Medicaid waitlist (lists that are often 5-10 years long). 

I don’t write this for pity or justification, but only to point out a few growing trends.  The military as it currently operates cannot expect the retention for which it aims.  They cannot retain service members if they cannot retain families.  As leadership has families that are younger and younger and as more military children present with special medical and educational needs it may be time to change the model.  Families only have so many moves in them before they say,  “Enough”.  Between school years, staff jobs, command, and back to school, and staff jobs and command (all one to two year assignments) families, even with typically developing children, face issues with continuity of education and stability.

We are done picking up the broken pieces of an incredibly resilient autistic child who has been shattered time and time again by the anxiety and uncertainty of this life.  This is our last military move.

No comments:

Post a Comment

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...