It may be a cliché, that people with schizophrenia are more intelligent than the average person, sometimes far more intelligent, even genius level. As well, they may be artistic and creative in objective ways.  And yet, when the inflammation of the brain and the disease takes hold, sometimes the person with schizophrenia can be erroneously identified as developmentally disabled.  That happened one time to my son in a hospital admission. The normal functioning of cognitive skills can be damaged like a stroke victim, sometimes crippling major brain functions, while missing other crucial areas.

Within the spectrum of schizophrenia, there is a wide range of disabilities, with some people still capable of high-functioning, but others not able to live independently and in need of conservatorship. I know of one woman with schizophrenia who can perform in her job as a pharmacist when she is stable, but periodically she must go on disability.  This is also an example of someone, whose illness either began after her formal education was completed, or she was still able to graduate and get employed, in spite of have periods of psychosis.  Some people are able to compartmentalize their mental illness while others cannot, depending on where the brain has been effected.

For the many people who develop schizophrenia in their formative years, schooling may have to go on a hiatus, or just end permanently. The disease can be particularly cruel to males, whose brains do not complete development until age 25.  With a serious brain disorder emerging, and the common secondary diagnosis of substance abuse disorder combined, the young male brain is at a significant disadvantage.

One resource that parents look into during the adolescent emergence of schizophrenia is the I.E.P. option, available to students nationwide in the United States.  The criteria for acceptance and rules for I.E.P. (Individualized Education Program) will vary from state to state, but this is one way to help the traumatized young person still achieve their basic education through 12th grade.  In some states, that person is allowed to be in I.E.P. until age 22.

Needless to say, the I.E.P. program implies that the child is taken out of their regular public classroom and given individualized instruction. The location for that instruction may take place on the school grounds, but away from the distractions and stress of being in a regular class with other students.  Gifted children have a similar experience, when they leave their normal school schedule and are allowed to participate in special activities designed to encourage and further develop their prowess in an area already identified.    When I was a child and in the Gifted program, I was part of a small group of 6th graders who were allowed to take a film making class.

In contrast, with the I.E.P. program, there might be some stigma involved and the student with emerging mental illness may not even want to participate in the alternative program being offered. That is the first hurdle.  In some cases, the I.E.P. administrators also determine that the student cannot live safely at home.  In cases like this, the student with mental illness may need to attend an out-of-state residential school. This type of education will be paid for, in part by the student’s school district, and in part by their county’s mental health department.

These Away-From-Home I.E.P. programs can be quite expensive. When my son attended one such school in Utah, the cost was $9,000.00 per month (in 2007 dollars). It was only after he had been living there for months that he was able to interview and qualify for the I.E.P. Once approved, the monthly fee was paid for by his former school district and its County Department of Mental Health.

But there was no retro-active reimbursement.  This is just one example of how the tragedy of mental illness can financially strain families.

In the case of my son, he did not do well in the I.E.P. and didn’t finish 12th grade.  We will never know if it was because he could just not keep up intellectually (after having been identified as gifted in 3rd grade and an A student until age 16), or if the physical environment and being away from home was so further traumatizing, that he would have been better off remaining with his parents.

As the 12-Steppers say, “I did the best I could with the tools I had.”  As parents, we had been convinced that sending him away to this program was the best option. We put our faith in social workers, who were part of this elaborate system to shuttle kids into these programs. They also provided a burly pair of men to get my son on a plane against his will and work as his travel companions so that he would safely arrive at the school in Utah.

This was the beginning of some very dark days for our family, but the I.E.P. program is designed to help the struggling students and I am sure it is well-regarded and appreciated by many families, looking for alternatives to give their son or daughter the education they deserve. I don’t know what their success rate is, but I do believe that a local I.E.P. program should be researched for the mentally ill child who simply cannot function in a normal classroom setting.   Whether or not the child needs to be shipped out of state and away from their family, with limited visitation rights, is a whole other topic, and one which I regret personally. I wrote about our experiences in my memoir.

Aside from your loved one having any continuing education or Special Needs support, just on the human level your interaction with your family member could be jarring and take a long time to get used to. With schizophrenia, a person may go through periods where they don’t communicate much or they are just more self-involved in their own thoughts and needs. The intellectual or artistic genius that a parent brings into the world may not seem like they still exist. A different person has taken over, with a different personality and often a much lower energy level.  Like any other handicap, from a physical injury, expectations have to be adjusted and it is healing to embrace the new and current person your loved one has become. I tell myself frequently that my role as a mother and a caretaker has shifted, but was always meant to be.

 

Author: Kartar Diamond is a mental illness advocate and author of Noah’s Schizophrenia: A Mother’s Search for Truth