I am writing a much different blog article today than I’d anticipated writing the day before yesterday, thank God. If the Prince William County Public Schools Administration had not come to their senses yesterday, this blog post would have begun this way:
The public school system is NOT your friend.
Especially not if, like I do, you have a child who falls between the cracks of what the system defines as “normal” and what it defines as “special needs.” My son Levi is now ten years old and in fourth grade. Prior to the age of two, he was diagnosed as being on the Autism Spectrum with Pervasive Developmental Delays. My wife Dara and I immediately got him into speech therapy, occupational therapy, and later, social skills therapy. Recently, his elementary school has treated him in a barbaric fashion, putting both his psychological and physical well-being in jeopardy. And they have written their regulations in such a way that they can assure themselves of legal immunity regarding this abuse. Our lawyer has advised us it would be senseless to try to sue the school for their use of isolation with my son, because the regulations have been written so broadly that litigation becomes almost impossible.
But after five years of struggle, yesterday the Prince William County Public Schools System with the administration of Coles Elementary School finally removed from the process at last decided to treat my family and my son Levi in a decent fashion. For now. Because we had decided to make a big stink. Because we had procured a lawyer who has litigated cases such as ours before.
My family and I moved to Prince William County in Northern Virginia in the fall of 2009, just before Levi was to start kindergarten. My wife requested that Levi be tested at that time for special services. His elementary school, Coles Elementary, denied him any services, stating that he was “too high functioning” to qualify. Over the following four years, Dara continued to request that Levi be re-evaluated for an I.E.P., an Individual Educational Plan. Levi was denied multiple times, because school psychologists and Levi’s teachers insisted that his problems affected only his social interactions, not his academics. But during the summer prior to Levi’s entering third grade, his situation took a turn radically for the worse.
Suddenly, my sunny, almost-constantly smiling eight-year-old began experiencing severe anxiety attacks and pervasive distorted thinking. During a visit with my father, the boys and Grandpa and I watched an old classic science fiction film together on TV, The Incredible Shrinking Man. Levi insisted that we turn the movie off before it ended. For months after, he compulsively fretted that he was shrinking. He told me he understood this was impossible, but he could not stop worrying about it.
Minor setbacks, such as dropping a toy in a drugstore, breaking it, and having to endure a brief scolding from me, resulted in major panic attacks which were extremely hard to control. Dara and I had no idea what had happened. Had he begun entering puberty early? Had a surge of fresh hormones produced this change in his affect?
Levi told us that he could not bear it, that he felt he was going crazy. He called his recent troubles, “my Dark Ages.” He begged us for help.
He had been seeing a talk therapist as part of a social skills group. Now we took him to a child psychiatrist. The psychiatrist prescribed an initial mix of three medications for Levi, then changed them several times until we seemed to find a mix which banished his depression and which eliminated his distorted thinking and compulsive worrying, even if it did not completely eliminate his panic attacks, which still surged whenever he felt unduly criticized or could not have his urgent needs met quickly enough. But these medications had undesirable side effects Levi put on a great deal of weight, he became lethargic, and he also had difficulties sleeping through the night, which required the addition of a sleeping aid.
At school, things failed to improve with Levi. His third grade teacher was utterly unresponsive to my wife’s pleas that Levi be allowed some accommodation due to his emotional illness. His teacher and the principal replied that, since Levi’s emotional troubles had not adversely affected his academic performance, he would not be given an I.E.P., an Individual Education Plan, nor would he be provided with an assistant teacher shadow who could respond to his emotionally fraught requests for interpretation and re-explanation of classroom project instructions before his frustration and fear of failure developed into a fit. The teacher was unyielding; she regularly chastised and punished Levi for behaviors to which his Autism Spectrum disorder made his especially prone, such as failure to bring work from home to school or to properly follow instructions. She even denied some of his urgent attempts to use the bathroom. All of these chastisements produced fits. He was now having several fits per week, sometimes even multiple fits in a single day.
His teacher’s primary response to Levi’s fits was to have him stand out in the hallway outside the classroom until he could stop moaning and crying. Yet this proved to be humiliating to Levi, his classmates, and to Levi’s younger brothers, both of whom could hear Levi’s fits from the next floor down. Dara met with the school’s principal and asked that Levi not be humiliated in this way, that whenever he would fall into a fit, he should be isolated from his classmates under proper supervision so that the other children would not be disturbed by his outcries.
Levi’s fourth grade teacher proved to be less inflexible than his previous teacher had. She met with a bit more success in stopping Levi’s fits before they could get rolling. Yet he continued having them on a regular basis. Also, his medications continued to cause adverse side-effects. His weight continued to balloon, and he began falling asleep in his classes at school. Dara consulted with Levi’s psychiatrist, and they agreed they would try to gradually wean him off of two of his three medications to see how he would handle this and if it resulted in any improvement with his lethargy and weight gain.
However, matters grew worse. Levi’s teacher began reporting that he was having as many as eight separate fits in a single class day. Dara was told he was no longer being placed in the hallway to “cry it out,” but the replacement solution was not fully explained to us. It turned out to be quite horrific, indeed; perhaps acceptable to a school bureaucrat, but a reminder of the severe punishments of a bygone era in public education to any layman who heard of it.
When I first had heard reports of Levi being locked into a printer or copier closet during his fits, alone, I denied to myself that the school could be doing anything wrong or against policy. I assumed the room that was spoken of must be an administrator’s office or an empty classroom, and that a councilor, administrator, or teacher would sit with him inside the room to watch him until he calmed down.
But descriptions of Levi’s confinements began reaching Dara and me from other parents who had been inside the school when Levi’s fits of wailing began. The said the room was not an office or a classroom but a printer supplies closet, and that he was put in there alone for up to twenty minutes, beating on the door and screaming until his fit finally subsided. An adult was present, but outside the door, not inside with Levi, where he could have injured himself with any of the stored equipment during his fits. Asher compounded the school’s administrators’ guilt by saying that the lights were left off in the printer closet when Levi was forced inside.
Shortly after I heard this confirmation of the school’s potential psychological and physical endangerment, if not abuse, of my son, I experienced one of Levi’s most violent fits yet, in public, without Dara present to support me. I had to chase him across the sidewalk which fronted my middle son’s Taekwando studio, dashing past a crowd of wide-eyed parents, many of whom clutched babies in their arms. My biggest fear was that Levi would run out into the busy parking lot. I tried to grab him, but he eluded my hold. I was finally able to corner him against a concrete post and secure him there until, a couple of minutes later, Asher emerged from the studio. I trundled Levi and Judah and Asher into the car. Levi’s fit, combined with Judah’s answering petulance and shrieking, continued all along the twenty-five minute drive home. Levi’s fit then lasted another twenty minutes before it finally subsided. All in all, his fit had lasted a full hour.
I had never experienced anything even remotely this bad and this traumatic with Levi until now. Within two days, I experienced the symptoms of my first-ever full-scale panic attack. I spent a week over the Thanksgiving holiday in treatment at a psychiatric hospital.
Two days out of the hospital, I insisted to Dara that she allow me to accompany her to her upcoming re-evaluation meeting with the Coles Elementary School administration. Even with me barely able to talk, barely able to walk, due to panic attacks partially inspired by the revelation of Levi’s treatment at Coles, the school administrators still insisted that they had done nothing wrong, and that nothing was amiss.
They had the gall to state that the primary responsibility for Levi’s solitary confinement in what they euphemistically called the Resource Room was the fault of Levi’s mother, Dara. Dara had been the one to insist that Levi not be allowed to have his fits in the hallway outside his classroom, where he humiliated himself, his brothers, and his classmates. Dara had been the one to insist that Levi be taken somewhere private and isolated (and properly overseen) while he was suffering through a fit.
Even in the midst of a gathering panic attack, I had the wherewithal to ask myself, “What if Dara had insisted that his teachers spank Levi with a wooden paddle whenever he had his fits? Would a parent’s directive to do something out of the realm of allowable school discipline have overridden their own regulations and forced them to violate their own approved procedures?”
Near the end of the meeting, they offered to show Dara and me the so-called Resource Room, which other parents and our son Asher had described as a printer or copier closet. I refused to walk up to the second story to view the room, knowing that I was on the verge of a major attack, and seeing the room where my son had been so cruelly treated would plunge me right into it.
Dara went to view it. She told me later that they had sanitized it, removed all printers, copiers, and associated equipment and supplies from inside. Their best offer was that Levi be tested yet again, for the third or fourth time, for his eligibility for supportive services, now that his “situation has changed.” This would require repeating the same lengthy psychological examinations to which he had already been subjected multiple times. They threw us a bone by saying they could arrange for such procedures within two weeks, rather than the six weeks it would normally take. This was their version of urgency.
Within two weeks of this meeting, Levi suffered a very severe fit which got him admitted to Dominion Psychiatric Hospital for four weeks. Coles Elementary staff were given permission by the doctors at Dominion to do all of their re-testing and re-evaluating of Levi while he was a patient in the hospital.
In order for us to get the system to declare Levi eligible for special supportive services, my wife Dara had to attend a meeting with the Prince William County Public Schools System Administration, in the company of her lawyer and with no representatives from Coles Elementary School actively participating. The presence of our lawyer, who has long experience litigating cases such as ours, may have been the tipping factor which induced the administration to be reasonable. Yet this was the culmination of nearly five years’ worth of effort. Who can say how much trauma my son might have avoided if the system had decided to be “reasonable” five years ago, when he was in kindergarten?
So, yes, one can look at this situation as the system finally coming to its senses. But what can account for the Coles Elementary School administration’s dogged refusal to allow Levi an I.E.P. and a supportive aide, someone who could immediately respond to his distress and head off his fits? The cost of such services wouldn’t have come out of the Coles Elementary School budget; funding for such services comes from federal, not local, sources. Money factors, however, may have played a role. Dara and I have learned that a school’s selection as a Prince William County School of Excellence depends, in part, on their percentage of students having I.E.P.s, with the higher the percentage, the less likelihood of being selected as a School of Excellence and receiving additional grants. But is it only money issues which accounted for their stubbornness over such a long period and so many conferences and re-evaluations?
I believe other factors were at play. I sincerely believe Levi’s conundrum was partially the fault of a sense of “lese majeste.” This particular principal, Ms. Forgas, apparently viewed us parents as serfs, supplicants, rather than her customers and employers. I believe she and her associates dug in their heels because they made a decision regarding Levi five years ago, and they refused to admit that they were wrong then and have only become more and more wrong in all the time since.
In a small way, this is government at its tyrannical worst. Should the Prince William Schools System Administration not back up the promises they made to us yesterday in thirty days, when they will be required to render a final judgment as to Levi’s school disposition, it will have earned a tenacious, implacable political foe in me. In such an instance, I will place myself on the barricades opposing any requested millage increase for the schools, and I know many other parents who will stand with me, whose children have also been denied supportive services to which they are legally entitled. I still retain the option of unleashing the hell-hounds of public opinion upon them, should they prove that their bout of reasonableness was only a momentary aberration.