Due to re-airing of “Born Schizoprhenic: Jani at 10,” I figured this would be a good time to share what the Jani Foundation is doing. I know many of you would like an update on how Jani and the rest of us are doing and I get that. But the Jani Foundation is a 501c3 public charity approved by the IRS on June 8th. Despite our personal issues and Jani’s current status, I still have a responsibility to those the Jani Foundation is trying to help. “The show must go on,” as they say, and the Jani Foundation has a job to do, regardless of what is going on in our personal lives.
The primary focus of the Jani Foundation is on aiding children with severe mental illnesses like Jani, specifically providing aid within the community. Incorporated in the State of California on Bodhi’s birthday, December 17th, 2012, myself as President, Susan as Vice-President, and the rest of the Board of Directors have spent the last six months really focusing on how we could best serve children with severe mental illness with the limited resources and manpower that we currently have.
The result of this has been the decision to focus exclusively on working with public school “Severely Emotionally Disturbed” or “SED/ED” programs, starting off in our home town of the Santa Clarita Valley, which includes the City of Santa Clarita (Valencia, Newhall, Saugus, and Canyon Country), plus Castaic and Stevenson Ranch in unincorporated Los Angeles County. The Santa Clarita Valley is located approximately 40 miles northwest of Downtown Los Angeles. There are five elementary districts in the Santa Clarita Valley which are Newhall, Saugus Unified, Sulphur Springs (Canyon Country), and Castaic Unified. All five elementary districts feed into one junior high/high school district, the William S. Hart Unified School District. All six school districts participate in what is known in special education terms as a “SELPA,” which stands for “Special Education Local Plan Area.” Use of a SELPA model allows several districts to pool their special education resources, which each district handling one specific area of special education (save Hart, which handles all special ed for grades 7-12). For example, Saugus Unified handles severe autistic students, meaning all students with that classification, regardless of their home district, get bussed to a Saugus school. Sulphur Springs handles K-6 students with severe physical disabilities. Despite this, all five K-6 districts handle some autistic, mentally challenged, and physically challenged students.
The only exception is SED, severely emotionally disturbed. All students with this classification, regardless of home district, are sent to Old Orchard Elementary in the Newhall School District, which houses the SELPA’s K-6 SED special day classes. Newhall and Newhall alone takes these kids, many of who have been suspended or expelled from their original “home” school. If you have read January First, you know that originally Jani attended Oak Hills Elementary (also in the Newhall School District) as this was the closest to where we live. As recorded in the book, due to Jani’s behavior problems in general ed first grade at Oak Hills, the school wanted to transfer her to the SED program at Old Orchard. At the time, I resisted, feeling that they just wanted to get rid of her and believing, incorrectly, that SED was a dumping ground for kids other schools didn’t want. Since then, I have seen how excellent Old Orchard’s SED program is, how committed the staff are to the students, and how attempting to “mainstream” kids like Jani into a general education program only increases their stress level, setting them up for failure. SED special day classes, if done right, in the model of the Newhall School District, are the best option.
So why SED classes? The answer is that this is where children with severe mental illness wind up. Some, like Jani, have an official diagnosis. Others do not (HIPPA laws prevent the District from sharing this information with us). When California terminated funding for AB3632, sole responsibility for the placement of mentally ill kids passed to California school districts. Outside of the home, schools are the next front line for childhood mental illness. Institutions whose purpose is to educate now find themselves having to provide actual treatment, something they were never intended to do. What makes Newhall so unique is that the Director of Pupil Services, Dr. Todd Fine, is a former school psychologist who also practiced outpatient for years. Unlike other directors of student services, Dr. Fine has a commitment to the SED program and his example trickles all the way down to Old Orchard administrators, teachers, and aides. It is harder to make change from the bottom up and than from the top down and we are lucky to have Dr. Fine and his staff collaborating with the Jani Foundation.
Since our purpose is to provide services for severely mentally ill children, public school SED classes are the best place to start. These children are in the program because they display aggressive, disruptive, and/or anti-social behavior. Having a daughter with child onset schizophrenia and having met other children with schizophrenia, bipolar, or other mood disorders, we know these “behaviors” are not a choice made by the child but symptoms of their brain based disorders. These kids are ostracized and marginalized for something they cannot control any more than a child can control having Down Syndrome, asthma, a heart condition, or cancer. Unfortunately, we live in a society that attributes all behavior to a “choice.” Such thinking is inherently flawed. First, it does not take into account human learning. In general, humans do not commit anti-social acts because we learn the consequences of these acts. When you defy society’s rules, there are consequences. These consequences start at the micro level, as toddlers inside the home, and progress to the macro level, which is prison or death, the ultimate penalty.
Humans, like other animals, learn from prior experience what to do and what not to do.
Second, it does not take into consideration that in general, as individuals, humans are basically good. War and other acts of violence come from external social and peer pressures. Don’t believe me? Is the only thing stopping you from killing someone the fact that it is a crime and you will be punished?
If the answer is “yes,” I suggest you seek help. Most likely though, the answer is “no.” You do not go and kill not because it is a crime but BECAUSE YOU HAVE NO DESIRE TO KILL. So, yes, I believe that humans are basically good. In general, we want to fit in (which can backfire, leading to support for or engaging in, violence). We want to be accepted.
Third, like most animals, it is in our genetic makeup to avoid conflict. In general, as individuals, we do not seek conflict out. This goes back to our ancestors and the “conservation of energy” principle and the desire for survival: Don’t expend energy fighting if you don’t have to and fight only to ensure survival.
If you come across a rattlesnake, leave it alone and it will go away. It will only strike if it feels its life is threatened.
So if a child engages in repeated anti-social behavior, we must logically conclude that negative reinforcement is not having its intended effect and if so, there must be a biological brain impairment that repeatedly compels the child to engage in behavior he or she know they will be punished for.
This does not mean excusing the behavior. But it does mean separating the child from the behavior. There who the child is and what the child does. And then there is the unseen illness and its actions. I know these kids. Other kids in SED, not just Jani. And I have seen who they really are underneath their illness. When the illness is managed and under control, these kids are smart, funny, and kind.
But because most of society outside their families and the school may never see that, these kids are at risk. They are at risk for suicide, police intervention, prison, homelessness (once we parents are gone). It is not hyperbole when I say that these kids’ lives are at stake. It is vitally important that we intervene as soon as possible to try and adapt them to society because if we don’t, society will punish them eventually. But this is a two way street. These kids have illnesses for which there are no cure. Society must also adapt to them and the occasional symptoms of their illnesses. In short, mentally ill kids must learn to live within society and society must learn to let them live within.
This is one of the reasons why we oppose residential. Yes, we understand that sometimes parents have no other option. But a residential inherently isolates the child from society, thereby defeating the entire purpose which is to help the child learn to function in the greater world.
As Susan puts it, we believe in “socialization over isolation.”
So this is what the Jani Foundation is working with the Newhall School District to do:
The first part of socialization is becoming aware of more than just yourself. In my observations of SED kids, I have found that they rarely interact with “neurotypical” kids. However, with each other they engage. Every year we have a birthday party for Jani (and another for Bodhi-he doesn’t get left out). Once Jani returned to SED placement after three years of only being able to work one on one with a teacher after all the other kids were gone, we of course invited her classmates to her parties. For a year, we got no invitations to other birthday parties. When we did it again in 2012, something happened. A few months later, another boy in Jani’s class had a party. Then another. Then another.
Talking to the parents, we discovered a shocking fact. Most of these kids hadn’t had birthday parties since they were very young. Why? Because their behavior would scare away other kids. But starting with Jani’s parties, they realized that finally they could have a birthday party for their child with people who would not judge when their child had an “episode” in the middle of the party. And just like in their classroom, the kids do not judge each other. “Everybody has their own issue,” their wonderful teacher tells them. At a recent birthday party for one of Jani’s classmates, I watched FOUR kids from Jani’s class, including Jani, have meltdowns, never at the same time, in chronological order. When one finished, another began. Each child went to the floor (this seems to be common amongst severely mentally ill kids, possibly as a means of keeping themselves from hurting others). No parent and no other child batted an eye. The rest of Chuck-E-Cheese must have thought we were incompetent parents. No, we just know that these moments pass and the best thing is to give the child space. The children not in meltdown mode would simply step around the one currently on the floor and when he or she was done the others would welcome them back into playing as if nothing ever happened.
This gave us the idea for Program #1: Social events throughout the school year just for SED kids and their families.
The Jani Foundation will pay the full cost of attending for these kids and their families at special events just for them. We have already lined up a swimming day at Swim Academy, an event at SkyHigh indoor trampoline, and an event at Scooter’s Jungle, a pretty damn cool indoor play area. We are working on a location to hold a Halloween/Karaoke party (these kids love to perform) and a Holiday party.
Originally, we wanted to do one event a month but the district was concerned about our funding stream and recommended three events. There are approximately 30-40 kids in the SED program, ranging from kindergarten to sixth grade, plus parents and any staff that would like to come. The cost for each event, including food, comes out to be approximately $500 (which assumes a 50% participation rate). Five events totals $2500 for the 2013-2014 academic year. This is an area you can help. We are seeking donations (www.janifoundation.org/donate) and sponsorships to ensure we can provide these social opportunities for these children. Your donation is fully tax-deductable to the extent allowed by law and we are more than open to corporate and small business donations. I would be happy to discuss business sponsorships and what the Jani Foundation can offer in terms of advertising (this website alone averages 4-8K hits a day). Although we wouldn’t turn anyone away, we are particularly interested in businesses local to Santa Clarita and businesses that operate franchises or divisions here.
These events need to be free because that is our best chance of getting the parents to bring their SED kids.
To help foster a sense of belonging and identity, we have asked and been given permission from Old Orchard to ask the incoming 6th graders to design a SDC 5 (5 is Newhall’s classification for SED special day classes) insignia and motto. The 6th graders will have to work together to design and create an insignia and motto they feel best represents them. The Jani Foundation will then pay to have this design printed on t-shirts which we will then give out to ALL SDC 5 students and staff. Assuming roughly ten dollars per shirt and total student/staff population of about 60, that comes out to $600. Again, we would gladly accept donations at www.janifoundation.org as well as sponsorships. For information about sponsoring this or any other Jani Foundation program, please write to me at firstname.lastname@example.org.
Each year, the next group of 6th graders would design a new insignia and motto for another batch of t-shirts. The goal of this project is to encourage teamwork, bonding, and a sense of ownership in their program. It is also a way of acknowledging the 6th graders before they depart to the Hart High School District and it gives the younger students something to look forward to.
This is by far the most expensive of our programs. We want to establish an after-school program on campus for SED students as these students cannot attend traditional programs due to their potential for aggression. Because we would need liability insurance and to pay a facilities use fee, the District recommended we partner with an existing afterschool program on campus to design a special program just for the SED kids, staffed by SED program aides who are familiar with working with this student population (and whom we would have to pay as independent contractors separate from the school district). Right now we are looking to start one day a week, on Thursday (the district’s minimum day), for one hour. The program would be based on the interests of the students and built to accommodate their needs. For example, Jani tells us that many of her classmates get into trouble because they can’t sit still for long periods of time, a fairly common effect of mental illness. So there would have to be a lot of movement. Likewise, competitive sports are out because competition encourages aggression and we don’t want to do that. The challenge would be developing a program that could cover all grades, K-6. Once again, it is a bonding experience and as we expand in days and hours, we hope that this will allow parents to comfortably go to work without worrying about their kids, allowing them make a living, something that we couldn’t do with Jani because the program I am describing simply doesn’t exist, at least hear.
The District is behind this idea but understandably doesn’t want us to start unless we have the funds for an entire year. The last thing we want to do is to start any of these programs and have to disappoint the kids because we ran out of money. I don’t have exact per student costs yet (we are talking to Peak Enrichment, which is already on campus and willing to work with us to develop a program) nor the precise cost of the aides (although we would need to pay them above their district hourly wage to encourage their participation); however, a ballpark estimate is approximately $10,000 to ensure that we securely operate this program for a full academic year.
And that’s it. That is what the Jani Foundation will be doing and I need your help. Donations can be made via our paypal account at www.janifoundation.org/donate. We also have a “Donate” button at the top of our Facebook page www.facebook.com/janifoundation. If you would prefer to send a check or money order made out to the Jani Foundation, you can mail it to Jani Foundation, 25330 Silver Aspen Way #226, Valencia, CA 91381. I assure you 100% of your donation will go to our programs. The Jani Foundation has no real overhead and neither myself nor any other officer take a salary from the organization. If you represent a business and are interested in helping, I can be reached at email@example.com. Our goal is to raise $13,100 before August 12th, the beginning of the new school year in the Newhall District. Please help. The more these children are socialized, the better their odds are survival.
Michael J. Schofield
The Jani Foundation