What if this child is not autistic and the mother is seeking attention?
This is the question that led me to professional advocacy. “The mother” is me. The question was written by a school staff member and discovered in my son’s school files.
The Refridgerator Mother Syndrome
Let’s go back to l997. My son had just been diagnosed with autism, which I had to look up in a set of encyclopedias from the 1950s. It read that autism was known as the “refrigerator mother” syndrome; caused by mothers who lacked warmth toward their children. It went on to say I would have to place my child in an institution. These were still the prevailing archaic beliefs lurking around back then. Back when there was no internet, or at least like we know it today; and no one I knew owned a computer, including me. ABA (Applied Behavior Analysis) was a form of intervention questioned with skepticism by school districts. It was the autism dark ages.
The incidence of autism was one in a billion, or at least that’s what it felt like. Schools weren’t prepared for it. Upon having my son evaluated by a private psychologist, their autism team recommended a research-based intervention they believed he required. The district refused to provide a program based on the principles of ABA, the recommended educational intervention. We had already been providing him this intervention in our home program and saw first-hand that it was working. We didn’t blink appealing the district’s decision. We depleted savings, borrowed from our families and moved forward and filed for due process.
Finding “the” Note
We came across the note while combing through my son’s records during the discovery process. The note fueled me through the hearing. Could my suspected Munchausen by proxy syndrome be rooted in the refrigerator mother syndrome theory? Could they really believe I was feigning my son’s autism?
Ours was not a conventional due process hearing. We hired Attorney Bill Laviano to represent us. I learned quickly that our hearing officer wasn’t a fan of Bill. It was during our due process that I also met Attorney Jennifer Laviano, Bill’s daughter, who participated in our hearing. You’ll hear more about Jen later. Weeks and tens of thousands of dollars into the hearing, we opened a sealed file which contained proof that the district was hiding key evidence that could change the outcome of the case. Upon this discovery, the hearing officer admitted he could no longer be unbiased (no doubt due to his disdain for our attorney) he recused himself from our case.
This is the moment I learned important decisions, even due process decisions, could be influenced by the way people feel about you. We were assigned a new hearing officer and had to start all over again. By the time the hearing was going to resume, it was the beginning of a new school year. The day before the official start of school, the district held their staff convocation. I will intentionally be evasive when identifying parties involved in the events. Even though it’s years later; and the fact that the school actions are not protected, I have no interest in calling any one out. At the convocation, an administrator explained to the staff that a high level administrator was no longer working in special education. The reason, it was explained, was due to a “difficult family in town” that had taken the district to due process.
Oh wait, heres where I have to go back an explain a key detail about our hearing. Among the staff testifying on the board’s side, this high level administrator was no longer working in the special education department. As it turns out, this person perjured themselves during their testimony while under oath. And like that, this staff member was no longer in their position and absent from the convocation. The person at the convocation explaining this squarely placed the blame on the “difficult family.” That night I got a phone call from a staff member attending the convocation . The phone caller explained that this person had gone on and on about us and my son. While never saying our names, he knew they were talking about us because, well, we live in a small town. Feeling violated, I called Bill Laviano. He explained that they had breached my son’s confidentiality, which was against the law because my son’s educational records were protected under FERPA (Family Educational Rights and Privacy Act). This is the educational equivalency of HIPPA. Even though the person never said our names, they gave enough personally identifiable information for people to figure it out. We had been outed. And with one phone, the entire case came to a close and the district agreed to place my son in an alternate school. Like I said, it was an unconventional case.
The Good and Bad of Due Process
Due process was exhausting, expensive, time consuming, soul depleting and taught me about navigating the special education system at its worst. But I was lucky to have worked with the best attorney. I soaked up every bit of what he taught me. Attorney Laviano treated me like a daughter (by the way, he didn’t need any more; he already had four). He talked to me like a dutch uncle. When he asked me to explain a detail about the case, he didn’t want to waxing on and on; rather to get straight to the point, and when I didn’t he would say
“Julie, when I ask you the time,
don’t build me the watch!”
He added a few expletives, however! He taught me many other pearls of wisdom that I use to this day, including what good can come out of the process when you advocate for yourself. It pays to know your stuff and not given in and give up. I learned there’s nothing in life worth fighting for more than your child.
Autism on the Rise
So the due process was over and my son was in the ABA school. It took months for me to shake off the fight mode I had been in for so long. It was time to go back to work. I was considering reentering public relations or television production, the fields I had worked in related to my degree in journalism broadcasting. Meanwhile, autism was being featured on the news as the numbers were rising every day.
Parents in the growing autism community had heard I was one of the first cases in my state to go to due process over ABA services. People had heard I took on the system and were calling me. A lot.
I spoke at length to everyone who called.I enjoyed helping parents. We were all a part of the same club. The calls kept coming, finally mounting to the point where it was taking on a life of its own. I was attending IEP team meetings with parents and enrolling in comprehensive trainings on special education law. I also joined a group of parents who started Connecticut’s Families for Effective Autism Treatment, a great organization devoted to supporting parents, raising awareness, and expanding treatment resources. I was busy doing my part as a founding board member. When pondering my next move, I realized that I had already started building a business as a special education advocate. All I had to do was to make it official. That’s how it happened.
Build it and They Will Come
Autism has become an industry. The sheer numbers have demanded a response. When my son was diagnosed, we had to hire a Board Certified Behavior Analyst (BCBA) from another state because we couldn’t find a one in ours. Today, the principles of ABA continue to be more acknowledged by school districts. BCBA’s increasingly have a seat at the IEP team table. School districts are challenged by the number of children who have autism and have no choice but to build capacity around the needs through a variety of interventions.
As much as I love what I do, I wish my phone would stop ringing because that would mean schools are always providing appropriate programming. A girl can dream.
I never wrote of this story while my son was in school. My son is an adult now. He has skills and is thriving. It seems forever ago I was accused of faking my son’s autism and having some kind of sick agenda of my own. This thought was held by people who didn’t have the benefit of knowing what we know today or the knowledge of appropriate interventions available.
I strongly believe that you don’t have to become a professional advocate to secure appropriate services for your child, but you do need to know your rights and be savvy to the system.
Remember Bill Laviano’s daughter, Jennifer? Well, Jen and I became friends and share a passion for simplifying special education laws for parents. We became co-founders of a video-based website called www.yourspecialspecialeducationrights.com and wrote a book called Your Special Education Rights: What Your School District Isn’t Telling You.
And my phone? It doesn’t stop ringing. I’m a special education advocate, this is what I do. When people ask me to explain what a special education advocate is, I say I’m in the business of improving educational outcomes for children who have disabilities. Not bad work!