Facing Early Onset Schizophrenia

My daughter (let’s just call her “ONE”), who is one of my true-life heroes, recently won a long-standing battle with the educational system on behalf of her son, call him “TWO”, who is afflicted with schizophrenia. The degree of his affliction had reached the point where his participation in public school could no longer continue. Public schools are simply not equipped to deal with extremes, be they extremes of intellect or social behavior. It is remarkable and a testament to all people involved that he was able to participate through the end of his ninth school year. The truth is, adolescent schizophrenia is rare and the story of the years they battled with the medical establishment to even get them to acknowledge his affliction is both tragic and inspirational. The fact is, so few know anything about this insidious disease. Our impressions are biased by dramatic literature and movies like “A Beautiful Mind” and “The Three Faces of Eve.” – entertaining they may be, yet none of these provides any useful information. The state in which ONE & TWO live is required to provide education for all children, regardless of issues like the ones TWO must battle each day of his life. Thus, the school board’s decision to disallow his continued participation in public classes was accompanied by a decision to create a special program for him. Their first thought was to hire and train someone to tend to his special needs while providing him with ongoing education. My daughter’s reaction to that was way beyond “no.” She enlisted a well respected attorney in the field. Together they declared war on the educational system and were prepared to take it all the way; in fact they fully expected the worst, that it would eventually be decided in the courts. For her part, ONE dug in and set about to learn even more about the disease, beyond the considerable knowledge she already had accumulated; she did her homework. Ultimately, she found a school that specialized in educating children with schizophrenia about thirty miles from their home, across the state line, and after visiting all others, she decided that this was the one that was best for her son. She would settle for no less. Now, as you might imagine, putting a student into a program in another state was a bitter pill for the school board to swallow. They became intractable and the battle waged for more than six months. There was virtually no limit to the inane proposals they offered. The succession of meetings would be comical, were it not so tragic. They brought in experts to endorse the “program du jour,” but their formal expertise and training was dwarfed by the practical knowledge ONE had accumulated since TWO had been afflicted. For example, another ludicrous proposal was to put him into a district school that served the special needs of autistic children – after all they were both mental disorders, weren’t they? Eventually, the school board capitulated and one day, when she’s ready, I think ONE will chronicle the many tribulations they endured through this period. Perhaps she will even share it on her own blog. I promise it will be a hoot. Suffice it to say that TWO will be going to this wonderful school; the lioness has once again prevailed – but at the cost of something dear. She is not allowed to share the details of the agreement with anyone, at the risk of them discontinuing the program for TWO. (In case you haven’t figured it out by now, their real names aren’t ONE and TWO.)

Observations: Having lived this experience vicariously with them, here are some observations I’ve made along the way.

• The schools in their district are always short of money ... aren't they all! They don’t have the funds even to maintain playground equipment. At one point during this battle, ONE participated with other parents in various fund raisers to buy minimal equipment for the kids…like clipping box tops at ten cents apiece. Fortunately, the cost of the special program for children like TWO comes out of another pot, but the enormous cost in time and energy by the school board, including experts and attorney’s fees they incurred on both sides, could have purchased a lot of playground equipment for their schools. And I cannot imagine this is an isolated case. The reality is, while we hear of schools bemoaning lack of funds for standard programs, they are all too willing to spend extraordinary time and money to defend the status-quo.
• In order to get the agreement done, my daughter had to agree not to tell divulge and of the details. Knowing ONE as I do, this was a very difficult concession – it offends her sense-of-right and she feels a like they were extorting her silence by agreeing to do the right thing. She nearly didn’t accept the terms, even though that meant they would have to continue the battle into court. She felt victimized. Why? Because it is wrong. Because it violates the fundamental founding truth that government is of, by and for the people.
• And that’s the bottom line here – the ultimate twist that cannot be allowed to endure: our government is taking on a life of its own. There are countless cases where it no longer acts for the good of the people, but rather to preserve its own existence. Rather than expend enormous funds hiring experts to tell us why what they are compelled to do can’t be done, it would be far better to hire an administrator to establish a program that seeks out kids like TWO and informs their parents that they have a beneficial program for them just a few miles down the road. Perhaps instead of hiding their heads in the sand and acting ashamed that they must send kids to another state, they could count the cases they otherwise deny and establish a local program of their own, one they can point to with pride.
• Schizophrenia is a chronic disease of the brain. It affects slightly more than 1% of the world’s population, typically between ages 20 and 40; twice as many as Alzheimer’s and five times as many as multiple sclerosis, It is treatable, but there is no cure. With appropriate levels of investment, it has been estimated that a cure could be found in less than ten years. Yet in general, people know very little about it. Unless it touches us directly, we simply don’t have the time to learn. So, we rely on dramatic anecdotes and rumor as our knowledge base. Sadly, when called upon to act in a situation involving someone with a disease like schizophrenia, we fall back on the base of disinformation for our experience and our response. If anyone is faced with such a scenario, there are good sources of real information, such as http://www.schizophrenia.com/szfacts.htm.