One summer afternoon in 2015, I was home with my teenage daughter, Allison, when she became very aggressive – throwing glass objects, hitting me and pulling my hair. Eventually she grabbed a butcher knife from the kitchen sink and threw it at my chest. Fearing for my safety, I called 9-1-1.

Three Irvine, Calif. police officers arrived. I told them that Allison has Down syndrome and mental health disorders. They called the Orange County Mental Health Department hoping to put Allison on a “5150 hold.” But we soon learned that people with developmental disabilities can’t be put on 5150 holds – even if they have mental health disorders. The County employee interviewed me and told the officers and me that “Allison was just having a bad day.” Since when is throwing a butcher knife at your mother just “having a bad day?”

After Allison was born, people told us not to despair because children with Down syndrome are so happy and loving – they hug everybody.

So much for stereotypes.

In the spring of 2016, my husband and I moved Allison half-way across the country to a private therapeutic boarding school that specializes in children with extreme behaviors and developmental disabilities. The pain and heartache of this decision brought us to our knees.

That’s why families like ours are applauding the recent 8-0 Supreme Court decision (Endrew F. v. Douglas County School District) in favor of a special education student that requires the school district to pay his private school tuition.

The Early Years

Allison was an engaging, verbal toddler until at age three, she developed a complete inability to speak or make eye contact with people outside of our home. Her early intervention therapists suspected autism, but one of her speech therapists suggested selective mutism, a social anxiety disorder. Sure enough, a psychiatrist confirmed it and we began treatment with Zoloft®. Within a week of starting treatment, Allison emerged from under an anxious shroud and managed her anxiety with the help of medication.

Now we had a child with a developmental disability and mental health disorder.

The Elementary and Middle School Years

Allison was an early reader, had a robust vocabulary and quick wit. One of my favorite stories occurred during an eye exam. Allison kept saying she saw a number eight. The ophthalmologist said, “No, it’s a letter Allison.” Allison responded, “Eight is a number silly.” It seemed her social anxiety was in check and her development was back on track.

Then Allison became expert at controlling teachers, caregivers and her parents with behaviors. What started as eloping or running away, hiding under her desk and defiance became more aggressive and destructive with each passing year.

In middle school, flipping tables, pushing over shelves, pulling computers off desks, hitting and kicking anyone in her vicinity was commonplace. The classroom was frequently evacuated for her peers’ safety. The school district implemented a Behavior Intervention Plan and provided a one-on-one behavior tutor to support Allison and manage her unpredictable behaviors.

In parallel, we began a four-year journey working with a behavior medicine pediatrician to try to manage her behavior with medication. Behaviors would improve for a short time only to return with a vengeance. We would adjust meds. We would try new meds.

We were desperate for answers. We were open to experimentation.

The High School Years

School psychologists, behavior specialists, psychiatrists and behavior medicine physicians all said, “Allison is the most complex case we’ve ever seen.”

We didn’t know that there were residential treatment centers that could help a child like ours.

Allison became what doctors call “morbidly obese.” She used aggressive behavior to gain access to food. We had a locking refrigerator at home. At school, she was allowed to eat her lunch upon arriving – after just eating breakfast at home. At restaurants, Allison would become aggressive if not allowed to have seconds.

Even with a one-on-one aide in the classroom, Allison was allowed to sleep during most school days – anywhere from 30-minute cat naps to five-hour sleep marathons. The attitude seemed to be: as long as she was sleeping, she wasn’t disrupting the classroom or endangering teachers and classmates.

It’s questionable whether our daughter was receiving an “appropriate public education,” while sleeping much of the school day.

Our family was in crisis.

We sought behavior services from Regional Center of Orange County, the local agency within the state’s Department of Developmental Services. It took four months to get approval. And then began the steady parade of entry-level behavior therapists with no experience with aggressive teens. The agencies that accepted our daughter’s case and signed contracts with Regional Center, with full disclosure of the severity of the situation, accepted public funds for a case they could not even begin to help. They sent rookies into our combat zone.

We requested an Educationally Related Mental Health Assessment from the school district in hopes of receiving mental health services to complement all the therapies we were trying. The school district acknowledged that Allison ”exhibits anxiety and obsessive-like symptoms,” but denied her services because they attributed her mental health conditions to Down syndrome and autism spectrum disorder.

According to the American Psychiatric Association and National Association of the Dually Diagnosed, the incidence of mental illness in persons with a developmental disability is three to five times greater than the general population. Yet our school district wouldn’t offer Allison mental health services at school.

We were doing our best to support Allison, but there was no system in place where teachers, caregivers, and family members could all be trained in the same methodology to provide her with 24/7 consistent behavior management and re-training. We were literally flying by the seat of our pants.

On two occasions we transported Allison to the ER due to dangerous situations in vehicles – once fleeing from a moving car, driven by a nanny, and another time she was assaulting me while I was driving.

Something very bad was inevitable.

Allison’s behavior medicine physician told me he had gone as far as he could – there were no more medications to try. He suggested that it might be time to consider a residential treatment center.

We weren’t ready to give up on meds and got a second opinion. But that physician agreed. There was nothing else to try.

The drugs weren’t working. The school district’s behavior intervention program wasn’t working. Regional Center vendors couldn’t provide qualified therapists.

The Search for Help

We hired a consultant who specializes in residential treatment center placements. Finding a match for our daughter wasn’t easy. One admissions director wrote, “In general it is harder for us to ‘change the ways’ of the older student…seeing that ‘behavior’ and ‘aggressive behavior’ stand out in Allison’s reports, she is not a preferred student for us.”

Our consultant found three far away schools that would consider Allison’s placement. I asked the school leaders, “What does it take to get expelled?” My husband and I were terrified that a school wouldn’t be able to handle her and we’d be bringing her home while we desperately searched for another school that would take her. The executive director at Bayes Achievement Center in Huntsville, Texas was the only one who could say they had never expelled a student who needed their services. Enough said, Allison was going to Texas.

We retained an attorney who specializes in special education law to help get our school district and Regional Center to place Allison in the residential treatment center. The process has been under way for more than a year.

Allison’s behavior continued to escalate and we could no longer wait.  We flew Allison to Texas and refinanced our home to pay for her placement. We believe our daughter is worth a chance at a new life. We wish the school district did too. It’s been painful to see all the public funds that have been wasted paying for services that didn’t work and used for legal fees to fight our request for reimbursement for a program that is working.

Delay and Denial Costs Significant Dollars – and Great Emotional Distress

When school districts and state agencies use delay tactics to try to avoid paying for the right placement, the entire family suffers. We can say with certainty that we were right. Cookie cutter special education and social service programs don’t work for complex children. The public entities responsible for providing services to the developmentally disabled should be working together to provide families with the right coordinated services at school, home and in the community. And maybe that means building more residential treatment centers in the United States, so that children like ours can get help closer to home.

Allison has been at Bayes for nine months and the changes in her have been transformational. She is learning how to respond appropriately to demands that are placed on her. She is learning that there are consequences for behaviors. She has lost 50 pounds by managing her food intake and increasing her activity. She is not allowed to sleep in the classroom. And when we visit her in Texas we receive training, so that we are better able to support her behavior modification program. She’s completely reset herself. She’s beautiful, calm and happy. She is healing.

It’s only recently that I’ve been able to say the words, “I was being assaulted nearly every day by my own child” because I am healing too.

We never doubted that God can work miracles. Paired with the right residential treatment center team, we’ve witnessed a miracle in our daughter. We now have hope for our daughter’s future.

Editor’s update: On July 17, 2017, Judge Robert G. Martin from the State of California Office of Administrative Hearings (OAH) ruled in favor of the student in Allison Deeley vs. Irvine Unified School District.