Our Journey Begins: Autism Diagnosis Overseas
Military special education advocacy became our lifeline when our son was diagnosed with Autism at a very young age while we were stationed at Naval Air Facility Atsugi, Japan. Since then, he has had an Individualized Education Program (IEP) under the categories of Autism and Specific Learning Disability with deficits in several areas.
Now 13 years old, my son is best described as an animal lover, a science enthusiast, a vegetarian “foodie”, and the world’s best hugger. Yet it hasn’t always been an easy journey.
A Sudden Shift: Behavior Changes and a New Diagnosis
Three years ago, he began exhibiting increased behaviors at the start of 5th grade at our neighborhood school. We noticed aggression, aversions to his favorite foods, tics, severe rage, and OCD behaviors. Things continued to get worse at school. The school called me almost daily to come pick him up, sometimes nearly an hour after he arrived. After a couple of months, it became clear that the school didn’t have a handle on the situation, so we contacted our EFMP Case Manager here in Hampton Roads, who assigned us a Regional Special Education Case Liaison, also known as an advocate.
By spring break, our son was continuing to regress. His doctor ran some tests, and he was eventually diagnosed with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), a condition where children experience a sudden and dramatic onset of neuropsychiatric symptoms. The school didn’t recognize it as a disability, but it gave us answers and access to medical interventions that could help. His doctor prescribed medications, and we now meet virtually with a functional practitioner who manages his nutrition and supplements.
Falling Through the Cracks: A FAPE Denied
Unfortunately, things at school continued to regress, and my son spent very little time in any educational program. Staff placed him in secluded rooms for most of the day, where he often had meltdowns while waiting for me to pick him up. He attended school for only an hour or two at a time. It was an impossible time for us. Not only were we living second by second with the phone by our side and the stress weighing heavily on us, but it was impossible to go on with life. I had to cancel anything that was too far from the house. Too many times, I would get a call in the middle of my daughter’s doctor’s appointment or while walking into the grocery store, and I would have to turn around and leave.
We scheduled multiple IEP meetings to discuss plans for next year in middle school. We knew what he was getting now was not working; he was not receiving a Free Appropriate Public Education (FAPE). It was almost an entire school year, and we weren’t making much progress. We wanted to explore options for the next school year, but the school offered us almost none. The school offered only our neighborhood-zoned school, which they agreed would not fit our needs, or a more restrictive school, Southeastern Cooperative Educational Programs (SECEP).
A Drastic Placement and a Call for Legal Help
The school placed my son in a Level 1 General Education classroom with a 1:1 aide the year before, so the new situation was a complete 180-degree change. Ironically, since he did so well with the one-on-one aide support, the school wanted to wean him off it. Now, the school wanted to place him in the most restrictive option of SECEP. It was hard to understand how we had reached this point in such a short time. We felt we had no options, but the school district painted SECEP as this magical place where he would heal, so we decided to give it a try.
Five weeks into SECEP, staff restrained my son so many times that he came home with massive bruises on his elbows and kneecaps. The school never informed us about any problems that occurred during the day. The staff forced him to eat lunch in a room while another child was naked and blamed and shamed him every time other students triggered him, and he couldn’t “just ignore them.” By the fifth week, the school’s answer was to restrict his environment more. They wanted to send him to Renaissance Academy, a school for alternative education that serves students with severe behavioral issues. This is when the Navy Regional Special Education Case Liaison passed our case to the civilian Navy Special Education Attorney.
Finding a Path Forward: Virtual Learning Success
After reviewing our file and the data, she realized the school had not placed him in the least restrictive environment, and she knew restricting him further would not be the correct answer. We fought hard for the last one and a half years for asynchronous virtual, but we hit every dead end. It seemed like an easy solution for the school district, but no one would approve it. It was maddening since my family was willing to do the work, even though it meant that most of his accommodations would be provided by me at home, rather than by the district. That is not an easy choice to make, but our son needed time to heal, and so did our family. The civilian Navy Special Education attorney was able to obtain approval for the asynchronous virtual schooling within a few weeks.
The past two years of asynchronous virtual learning, supported at home, have been transformational. He has learned more than ever before outside of SECEP, without disruptions or distractions. Although challenges remain, SECEP no longer triggers new behaviors, and some of his previous behaviors have disappeared. We are still working with his virtual case manager on those that remain. However, he does not have new triggers/ behaviors.
What I Wish I Knew Sooner
My only regret is not having pushed for legal assistance from the civilian Navy Special Education Attorney sooner, especially before agreeing to placement at SECEP. The attorney shared ideas for other placement options that the school district never presented to us but should have considered before placing him in SECEP. Unfortunately, because the school last placed him in SECEP, if we return to in-person learning, the district will automatically enroll him in that program again, and we will have to fight hard to secure placement in the least restrictive environment.
Advice to Other Military Families Advocating for Special Education
My advice to parents is to thoroughly research all options, including out-of-zone schools, before considering more restrictive programs like SECEP. Don’t assume that schools will provide you with all the options; you must educate yourself and research so you can effectively advocate for your child.
Additionally, seek guidance from the experts. Contact Partners in PROMISE and utilize their free 1:1 Special Education Parent Mentor Consultations. They are experienced and trained in special education and can help you get on the right path.
Please ensure that you contact your service branch EFMP so they are aware of any adverse school situations that may arise. If your advocacy for your child is not yielding results, EFMP can assist you and connect you with an EFMP Special Education Attorney to provide additional legal support.
Last, never stop advocating and being a voice for your child. They need us to speak up, and sometimes it takes out-of-the-box ideas to get them access to an education.
This article was written by a military parent who wishes to remain anonymous to protect their family’s privacy.
Leave a Reply