Month: September 2010

Our Finest Hour

For a long time, we fought against Jani’s schizophrenia without knowing what it was. By the time we knew what it was, by the time we got a diagnosis, it felt like it was almost too late. No matter what medication we threw at it, it kept advancing on her, taking her mind. The spring and summer of 2009 was our desperate attempt to check its advance.


It was probably June of 2009 where we started to turn the corner. Getting the two apartments allowed us to protect Bodhi, thereby removing the schizophrenia’s primary target. By giving Bodhi and Jani their own apartments, it ensured that Bodhi would not grow up afraid of Jani. And he hasn’t. We have kept him safe.


It also reduced Jani’s stress by removing the target of her schizophrenia that she couldn’t resist.


The next turning point came in July of 2009 when Jani started Clozapine. Clozapine can have miraculous effects against psychosis, if the body can take it. Jani’s could. Clozapine didn’t make the hallucinations completely go away, but it started the process of bringing Jani back. It gave her personality a chance to re-emerge out from under the psychosis.


Eventually, we had to add the Thorazine back again. Thorazine, the oldest anti-psychotic, is the atomic bomb. For a short time, it obliterates the hallucinations and disordered thinking, allowing Jani to be herself.


We fought long and hard to develop an education plan that would work for her and, thanks to the Newhall School District’s willingness to think outside of the box, we have succeeded. Jani’s current teacher, a really cool guy, is amazing me with tales of Jani’s intellect, intellect I thought had been destroyed by her disease.


All in all, we, and those who have helped us like Dr. Woodall, UCLA, and the Newhall School District, and yes, even Jani’s old therapist (before she left), have been able to give Jani some semblance of a life back. The schizophrenia and its weapon psychosis is still there, but we have settled down into a cold war. On occasion the illness shoots at Jani’s life in our world from across the border in Calalini, but overall the Army of Calalini is holding. It is still a huge part of her life. It always will be. But she, and we, are learning to live with it. Jani is growing up despite her illness.


But all this has not happened by chance or by accident. It has happened through tireless advocacy on the part of Susan and myself. If the war against the schizophrenia is the main war, we have also fought countless proxy battles with various service providers, the most recent of which was against the Santa Clarita Child & Family Center.


We refused to give up on Jani and refused to give up on her having a happy life, and so we have fought anyone who we perceived as standing in her way.


Unfortunately, it is difficult to fight two wars simultaneously. You can do it, but you end up doing neither very well. Even in World War II, US policy in the Pacific was to contain Japan’s further aggression while the US military focused most of its energies on Nazi Germany.


Let me tell you a little story:


Hitler’s armies invaded Poland on September 1st, 1939, which led to Great Britain and France declaring war on Germany. Hilter unleashed the “Blitzkrieg” or “Lightening War” that slashed through Poland in weeks before turning west through the Low Countries and France. The Blitzkreig was a perfect tactic for these nations, nations that had no sizable natural obstacles to the speeding German Panzers. The  conquest of Europe was complete in late June 1940 when the British were forced to evacuate from Dunkirk. In less than one year, Hitler had taken over the almost the entire European Continent.


With the fall of France, Hitler was now free to turn to his attention to Great Britain, but England, unlike the previous countries the Nazi war machine had rolled through, presented a fairly significant natural obstacle: The English Channel. It was never Hitler’s plan to invade England. All he really wanted to do was to take England out of the war so he could focus on attacking and overrunning the Soviet Union, referred to as “Operation Barbarossa.” Many of Hitler’s top generals tried to talk him out of attacking the Soviet Union. Most, including Hermann Goring, the head of the Luftwaffe, wanted Hitler to cross the Channel and invade England. Even in mid 1940, Hitler’s generals had no doubt that the United States would eventually enter the War and they felt it necessary to remove Great Britain as a staging area for the Americans whenever they finally entered the war.


There is a myth that Hitler was afraid of water. This isn’t true. Germany invaded Norway after all, which required them crossing the Baltic. Hitler didn’t want to invade England because he didn’t think he had to. His goal was to destroy the Royal Air Force, gain control of the skies of England, and bomb London and other British cities so badly that the British people would force Churchill to sue for peace with Germany, thereby living Hitler free to focus on the Soviet Union. Goring, despite having personal doubts that the Luftwaffe was ready for the RAF, assured Hitler that his Luftwaffer fighters would wipe out the RAF fighter command and that constant raids by German bombers would quickly break the British people.


The Battle of Britain began in July 1940, with the Luftwaffe engaging RAF fighters and destroying airfields and aircraft factories. Initially, things went well for the Germans. In early September, a German bomber drifted off course and dropped its bombs on East London. The British retaliated the next night by bombing Berlin, a small attack which killed only ten Germans and none of the RAF bombers made it back to England. However, Hitler was so furious that he directed the Luftwaffe to start bombing population centers of England, namely London. This was the beginning of the “London Blitz,” eight months of nearly nightly bombing of British cities and population centers.


Hitler’s kneejerk reaction to a handful of British bombs falling on Berlin had an unintended consequence. It took the pressure of British airfields and allowed the RAF to rebuild and re-arm.


Still, through December of 1940, the Luftwaffe dropped over a million tons of incendiary bombs on London with a loss of only one percent of their aircraft to British guns.


The truth was the RAF was woefully outnumbered by superior German forces and the British War Cabinet had little defense against the constant bombing.


Churchill desperately needed the United States to enter the War. He begged Roosevelt, knowing that England could not withstand this assault forever. Roosevelt was sympathetic but knew that the American people would not support a declaration of war on Germany. He did what he could, sending weapons and supplies, only a handful of which made it across the Atlantic due to German submarine attacks.


England had no hope of surviving, let alone winning. In the Fall of 1940, it must have looked pretty bleak to Churchill. Another leader might have told his people to prepare for life under German control, that the only way to ensure the survival of Great Britain was to surrender.


But he didn’t. Instead, he used the only weapon he had: anger. Specifically, the anger of the British people. He fanned their anger against Germany through his oratory, turning the simple act of survival into an act of defiance. He made the British people feel that by simply surviving, by enduring the Blitz, they were in fact fighting back against the Nazis. Rather than assuring the British people that the end was near, he did the opposite, telling them to prepare for a long war. He gave many powerful speeches, but perhaps his finest was this one, of which I have included the final paragraph:


But if we fail, then the whole world, including the United States, including all that we have known and cared for, will sink into the abyss of a new dark age made more sinister, and perhaps more protracted, by the lights of perverted science. Let us therefore brace ourselves to our duties, and so bear ourselves, that if the British Empire and its Commonwealth last for a thousand years, men will still say, This was their finest hour.


I have been asked several times in the past few days, after writing my last blog, why I do what I do. Why do I publicize what is technically a private matter between me and those who are supposed to provide care to Jani? Why not go through the “proper channels?” Indeed, Jani lost her therapy exactly because we did publicize this battle with Child & Family Center, so why persist? Wouldn’t we be more likely to get the services we need if we kept our struggles out of the public eye? “You can get more flies with sugar,” Jani’s therapist once told Susan, “than with vinegar.”


Winston, dear girl, would disagree.


The simple answer is that those who ask those questions have never been in this battle before. None of them have special needs children, mentally ill or otherwise. From their perspective, all they see is me vilifying individuals who I perceive as failing Jani and, I suppose, they worry that they one day will be the target of the same wrath of another irate parent. They worry I am setting a dangerous precedent. Dangerous for them, perhaps.


Because these people forget that Jani is not unique. Jani is not only severely mentally ill child out there. As I have said before, there are well over a hundred families in my online support group with mentally ill/autistic children, and more keep coming everyday.


And every single one of them tells a story of their children being abandoned by uncaring “professionals” because they were too severe, be they psychiatrists, psychologists, teachers, social workers, whatever. It is not that they, or we, are shocked that the system fails to help our children. We are long since beyond that. What shocks us, what angers us, is how easy it is for some “professionals” to simply turn their back on our children and throw them to their fates.


These people who question why I do this forget that this blog doesn’t exist just for me. It is a beacon of light to every parent, every mentally ill child, every mentally ill adult, who feels like their caregivers don’t give a damn about them. My experience is meant to be educational, It is meant to remind the thousands of others out there across the country that they don’t simply just have to sit there and take it.


Medical, psychological, and educational professionals don’t like it when you challenge their power. Some manage to overcome this and some don’t. And not all of them need to be battled. Many are wonderful people who truly are committed and will do whatever it takes.


But part of my job is to remind parents that they have a voice. No one will ever fight for your child as hard as you will. After all, it is you and your child living under the continual bombing, not them. You have to do whatever it takes to get your child what you feel he or she needs and if that means you bruise a few egos in the process, so be it.


Those of you who question my motives keep thinking that I am only seeking care for Jani. If I was, this blog wouldn’t exist. As I have said before, it is not enough that Jani gets what she needs if Mari, Maddox, Logan, Brenna, Ailish, and Anthony don’t.


You see, if I stay silent, if I go through the “proper channels,” the flaws in the system will never change. Social change only happens because the those fighting for it make it public. The Civil Rights Amendment happened because of television. The fight for equal rights had been going on for years, but it wasn’t until the average American saw the images of peaceful protestors getting hit with water cannons and attacked by dogs that they understood what was really happening in the American South.


This blog is my act of defiance against a system that denies basic civil rights to children (and adults) with mental illness, that can treat them as if they have no value to society.


So what happened to Britain? Well, the nightly bombing failed to demoralize the British people. Eventually the Luftwaffe began sustaining heavier losses because the RAF, although badly outnumbered, fought them with a tremendous ferocity. And for the British people, they ferociously kept coming out of the bomb shelters every morning and returning to pick up the pieces of their shattered lives. They refused to give in.


By May 1941, the Luftwaffe had failed to gain air superiority over the UK. Spitfires still ruled the skies. And the British people were as determined to fight on as ever.


So Hitler ended the Blitz. Never again would the Luftwaffe bombers be a significant part of the war.


And in December 1941, the United States finally entered the war.


These blogs are my dispatch from the War Cabinet under London, encouraging you to keep fighting, because I know that eventually, America will enter this war with us.


No matter how bleak it may seem now, please know this: One day, our grown and happy mentally ill and autistic children, free to live their lives in a society that values them, will look back on this day and say this was our finest hour.