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 Refrigerator Mother Syndrome
Let’s go back to l997, the year my son was diagnosed with autism. Once I suspected he had autism, I needed to learn more about it. I couldn’t just google it back then, so I had to look it up the old-fashioned way in an encyclopedia at the library. 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. It’s hard to believe today, but these were the archaic beliefs lurking around back then. 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 ABA (Applied Behavior Analysis), a research-based intervention. The district refused the recommendation. We had already been providing him this intervention in our home program and saw first-hand that it was working. Knowing it was working, we knew we had to appeal the district’s decision. We depleted savings, borrowed from our families and moved forward and filed for due process.
We came across a note while combing through my son’s records during the discovery process, it read “What if this child is not autistic and the mother is seeking attention?” The question in the note essentially accused me of having Munchausen by proxy syndrome. Could they really believe I was feigning my son’s autism? It was enough to put a fire in my belly, a fire that fueled me through the due process hearing.
Other Memorable Moments: The Perjury and The Recusal
We hired Attorney Bill Laviano to represent us. As it turned out, ours was not a conventional due process. Not long into the hearing, an employee testifying for the board committed perjury under oath. It was a highly dramatic scene. Days later we would find out that the employee lost their job. I had thought that would be the most memorable moment of the hearing. It was not.
It had become clear that our hearing officer did not like our attorney. This worried me. Toward the end of 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) and recused himself from our case. This was another highly dramatic and memorable day. This was the day I learned that important legal decision could be influenced by the way people feel about you. After nearly six months of the hearing, we learned we had to start all over again.
Months later, we were assigned a new hearing officer. It was also the start of a new school year and the district was holding their back-to-school convocation. All school employees were in the audience when it was announced that there was a “difficult family” with a “son who had autism” who had taken the district to due process. They went on to explain this case was the basis of the board employee losing their job. That night I got a phone call from a staff member attending the convocation. The phone caller explained how they were talking about us at the convocation. 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. It turns out you don’t have to say someone’s name to breach their confidentiality. If you give enough personally identifiable information for people to figure it out, that’s all it takes. We had been outed.
And with one phone recounting the events at the convocation, 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 that when you advocate for yourself, you can greatly improve the situation and ultimately change the outcome of your child’s life. It pays to know your stuff and have the mindset not to give in and give up. I learned there’s nothing in life worth fighting for more than your child. It’s also when I met Bill’s daughter, Attorney Jennifer Laviano, who also represented us in our hearing. You’ll hear more about Jen later.
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!