It is hard to type right now. It is difficult to make my fingers work on the keyboard. I keep hitting the wrong keys. I want to hit a particular key, my mind wants to hit a particular key, perhaps the “a” key far to the left. But I find that my left hand hovers, as if the message from my brain to my left hand fingers is not getting through. Instead, the right hand will take over, hitting keys to the right side of the keyboard that I don’t really want to hit, as if it is confused by the failure of its twin to respond and is trying to make up the difference.
The left hand keeps wanting to just shake above the keyboard. I am shaking all over, but the right hand seems to be better able to function in this state.
I am not on drugs. I haven’t been drinking. I don’t do either of those things. I can’t because both are an escape route and I cannot escape. Jani is in a prison and I must stay with her.
I am not shaking with anger, although I felt a lot of that emotion today. Now it is has mostly spent itself. Anger is a difficult emotion to sustain for any sizable length of time.
Maybe the shaking is what is left after the anger is gone. Maybe it is the remnants of the adrenaline coursing through my veins.
Today was another of Jani’s IEPs, which stands for “individualized education plan.” Each state has a different name for it but it is requirement under the ADA and IDEA for all students receiving any kind of special education.
I’ve been through a lot of these IEPs by now, and I will go through many more. I will continue to go to them until either Jani graduates the K-12 education system or the that same system breaks under the weight of her needs and gives up on her. Despite the fact that federal law requires mentally ill children to receive the “most appropriate education in the least restrictive environment,” for students like Jani with severe mental illnesses, the outcome is usually the latter.
You see, for us parents of severely mentally ill children, we do not just have to fight the illness itself, which is hard enough. Susan and I do not just to battle with Jani’s schizophrenia, which everybody, with perhaps the exception of a few internet pundits who have never met Jani, accepts. Nobody denies anymore that Jani is truly ill. Strangely enough, I now find myself missing those days. I think that is because back then, we thought that the diagnosis would open the door to treatment. I never fought for the diagnosis of schizophrenia because I wanted the notoriety of having a child with the rarest and most severe childhood mental illness in the world. It was a means to an end. I thought the diagnosis would open doors for Jani to be treated. I thought that once she had this diagnosis, the system would come to her aid. How could it not? How could it not come to the aid of a child with schizophrenia?
It turned out I was wrong. The diagnosis opened no doors for Jani, gave her no better access to therapeutic care.
A few days ago I caught up via phone with Shari Roan, the LA Times reporter who first brought Jani’s story to the attention of the world, which led to Oprah, 20/20, and Discovery Health. Collectively, those four media sources combined to send Jani’s story around the world. Even people living in the shadow of Kilimanjaro in Tanzania know of Jani. People from Olathe, Kansas to Jakarta, Indonesia know about Jani. She’s been on the front page of newspapers in Tokyo. She has a Greek fan club; another in South Africa.
Shari and I were just talking, catching up, as it had been a few months since we had last spoken. Shari, along with Erica the Oprah producer, are the only media people who have continued to check in with us. As far as I know, there is neither another LA Times piece or another Oprah episode planned. Shari and Erica just call because they care, because they became attached to us and to Jani, and they will still care even when the LA Times goes bankrupt and Oprah signs off the air for the last time.
I appreciate that. It makes me feel like they didn’t just use us to get our story. The story is long gone now but it was never the story that mattered to them. It was Jani herself.
During my last conversation with Shari, she expressed disappointment that in the year since the original Times story ran, no doors have opened for Jani. Shari had hoped that publicizing Jani’s story would lead to concrete help for us that would make our lives easier. Easier? No. Better, yes, but not in the way that Shari or I expected.
Nobody stepped forward to save Jani. Instead, hundreds stepped out of the darkness where they had been hiding in plain sight wanting us to help them. The publication of Jani’s story in its various forms had let them know that they were not alone, that another child like theirs existed.
Many things have touched me over the past year. Two particularly spring to mind. The first was a woman who had three dollars in her checking account… and gave us one. One dollar, which after Paypal fees was about seventy -five cents. That seventy-five cents meant more to me than the handful of large donations, because that took sacrifice. Last July we received a ten thousand dollar donation from a foundation I will not name. The representative wanted us to use to money to retain an educational attorney for Jani, but we had already tried that The educational attorney achieved nothing more than we were able to achieve on our own. So I used the money to pay Jani’s outstanding hospital beds. The rest was eaten up by the cost of paying rent on two apartments. About a month later, the representative called me for an update on how the money had been spent, so he could report this to his foundation’s board. I told him. I never heard from him again.
In September, I received a one thousand dollar donation with a note attached that asked me not to give up on social services. Things would, it said, be much worse without them.
One year later, I think that person, although well-intentioned, was wrong. If they were right, I wouldn’t have needed the thousand dollars in the first place. I wouldn’t have to keep dividing my family between two apartments. Because still to this day, all the Department of Mental Health has to offer is residential placement. All they can do is take Jani away from the only ones who really love her and will fight to the ends of the earth for her.
To be fair, it isn’t entirely their fault. The State of California ended all true “day programs” for mentally ill individuals a few years ago. Now there is only one day a week of talk therapy…. Or out of state residential.
Nothing in-between. Which essentially means the state is breaking the AB 3632 law that requires the most appropriate education in the LEAST restrictive environment.
So why I am I shaking? I am shaking because I have started to realize just how far Susan and I, and every other parent of a severely mentally ill or autistic child who has contacted us and shared their story and joined our online support group, are from the rest of humanity. I am so far beyond that I am losing my ability to live in your world as it is now.
Maybe all of us parents of mentally ill children, or autistic children, eventually become like our children. They are isolated, and because we love them and will not abandon them, we become isolated too.
For the IEP to even happen today, the Newhall School District had to arrange an aide to take Jani and play with her, for there was nowhere else for her to go. This aide was Jani’s one-to-one last year, and she bonded with Jani and Jani bonded with her.
Bodhi was in preschool. We scheduled the IEP on a morning when we knew he would be in preschool.
For the last several IEPs, I have noticed a developing seating trend around the conference table. Representatives of the Newhall School District sit on one side, coincidentally the right side, while the representatives of the Department of Mental Health and their contracted agency the Santa Clarita Child & Family sit on the other. The Newhall contingent is large, featuring the district’s Director of Pupil Services, the school principal, the assistant principal, the school psychologist, Jani’s school appointed occupational therapist, and Jani’s teacher from last year. That’s six people, compared to a single representative from the Department of Mental Health, Jani’s therapist through the Santa Clarita Child & Family Center, and this time (at our request), the VP of Programs for the Santa Clarita Child & Family Center.
Since the Newhall representatives outnumber the DMH and Santa Clarita Child & Family Center representatives, the Newhall people don’t all fit on the right side of the table, meaning that some stretch around to the left side. Nonetheless, the DMH representative and the Child & Family Center reps always sit together. If we were all friends and all committed to the same goal, would we not be interspersed: duck, goose, duck, goose? Instead, it is all ducks on one side and all geese on the other. It’s like being back in high school and sitting with your clique.
Susan and I sit at the end of the table, between the Newhall contingent and the DMH/SC Child & Family contingent. This physical placement is entirely by accident, but it represents what we want. We want the two contingents to work together to keep Jani out of the hospital. However, I have noticed that we seem to sit slightly closer to the Newhall clique. Despite our struggles and frustrations with them in the past, they have still done far more for Jani than DMH/Child & Family Center. DMH always comes to the table with the same thing: recommendation for residential. The Newhall School District has long since accepted that we are not going to take that recommendation and to their credit have worked to think outside of the box and come up with innovative new ideas to provide Jani with the education she is entitled to. So I suppose we feel an unconscious affinity for the Newhall contingent because they have proven themselves willing to try new ideas, developing a truly individual program for Jani rather than trying to force her into one of their existing special education programs.
Dr. Fine is the Director of Pupil Services for the Newhall School District. Our relationship with him is complicated. Over the past three years, Susan and I have ping-ponged between viewing him as an adversary and viewing him as an ally. When we perceive that the school district is dragging its feet, we have made him the target of some vitriol. I give him an immense amount of credit that he is a big enough person to not take this personally, although I know this is not always easy. Since our story became public I have been attacked in cyberspace by plenty of people and I know it is no fun to be crucified by people who don’t even know you. Dr. Fine has done a better job than I could have at putting aside his personal reactions to our attacks and focusing on doing what is best for Jani. He is a credit to the Newhall School District. He has become an ally in diplomatically defending our decision to DMH not to put Jani into residential.
Overall, the Newhall School District has shown what can be done for mentally ill children when you think outside of the box. The fact that the District will continue to provide Jani what she needs despite budget cuts that are resulting in staff furloughs is a testament to their commitment to Jani. They continue to claim her as one of their own. Over time, our relationship has become something of a family relationship: we may fight from time to time, but there is mutual respect. They respect our commitment to do whatever it takes to get Jani what she needs. If I have hurt or offended Dr. Fine or any other staff of the Newhall School District, I apologize. I am fighting for my daughter’s life and well-being, and it can be difficult to be diplomatic under those circumstances. Dr. Fine understands that and I appreciate that immensely.
We didn’t spend much time discussing the District’s plans for Jani, because we already largely knew what they were. Occupational therapy has been a huge success. It has brought back Jani’s love of school. So the plan is to expand it. A teacher at Jani’s school last year who left to teach at another school this year has agreed to drive over after his regular day finishes and teach Jani for an hour three days a week. He didn’t have to do this but he is. He remembers Jani from last year and Jani likes him, so he is willing to do it.
It’s gotten to the point where I will, upon hearing this plans, express willingness to drive Jani to other school to make it easier on her teacher, but Dr. Fine shot this down, wanting to keep Jani in a single school setting so as to not disturb her. I am so used to having to bend over backwards to get anything for Jani that it takes some getting used to that the District is increasingly taking on more and more of the burden. It is them, not the Child & Family Center or DMH that is giving us respite.
Dr. Fine wanted to hear from DMH. He is well aware of the budget crunch that the district is facing, and he is always looking for outside help, not only because of money but because he knows Jani (and we) need it. Once again, though, all DMH had to say was that their recommendation remains residential.
I am used to this by now so it doesn’t faze me. Dr. Fine asks us if DMH could find something geographically closer, would we be interested? “We are always willing to listen,” I answer, which really means “no.” I have no intention of sending Jani to residential because I don’t feel it is necessary. We got the two apartments to protect Bodhi. The DMH woman tells us that Jani needs supervision “beyond what any family can or should be expected to give.” True, but we are doing it. Don’t you see that? We’ve made it a year now. Yes, it is exhausting and yes I know I complain a lot about it on this blog, but we are doing it. We need help in the form of activities for Jani, not residential. It is like having a cold but being told the only cure is cutting off your head.
I knew the VP of Programs for the Santa Clarita Child & Family Center was coming. I had asked him to come. I had wanted him to come so Dr. Fine could ask him about any other programs that the Center might be able to offer, because asking Jani’s therapist at Child & Family, who also sits in on these IEPs, has become a waste of time. Not that I expected him to offer anything. I actually expected that he was coming to defend his organization, explaining why they could not meet Jani’s needs on a outpatient basis even though that is what they are contracted with DMH to do. I expected a continuation of the phone conversation that was in this prior blog.
To my shock, this is what he said:
“I don’t know Jani. All I know is what I’ve read in her file. What I want to say, and what I want on the record, is that I think our services have failed to help Jani.”
In the private sector, when a company admits it has failed in some area, it means that it must now figure out how to make it right. When non-profit agencies contracted to state mental health announces they have failed, it means they are giving up. When you don’t pay for a service, and you don’t with a non-profit, they can fail you without the same consequences a private company faces when they fail customers. Non-profit contracted agencies face no consequences because their budget comes from the state. The state is their customer, not the “clients” as they like to call us, and the state is happy as long as the price is right. The Department of Mental Health, which pays for the Santa Clarita Child & Family Center, couldn’t give a damn whether Child & Family is meeting the needs of clients in their district, because if a client leaves, it just means less money DMH has to pay.
“It is our clinical determination,” he went on, “that Jani is not improving.”
I knew where this was going. I had already been through this before with Blue Shield. If a patient is not improving, they cut authorization for further hospitalization. To use a cancer analogy, if you haven’t responded to chemotherapy within a set time limit, we are going to stop giving you chemo and let you die (which actually does happen).
“How can you say that?” I demanded.
“Seven hospitalizations in the past year.”
“But there have been fewer hospitalizations this year and they have been for a shorter duration!”
“She’s still going to the hospital.”
I was getting really angry now. “Do you know anything about schizophrenia? It’s a lifetime illness. You don’t just get over it like a cold. Who is making this ‘clinical determination?’”
“Me.” This from the guy who had never met Jani. “And her therapist.”
I looked at Jani’s therapist, expecting her to talk about the improvements she had seen in Jani, but she stayed silent.
‘”You are always saying how well Jani is doing, how she has improved!”
“That’s not true, Michael,” she responded in a tone as if I had called her a whore. “I am always telling you how she is struggling.”
I couldn’t believe this. My daughter’s therapist was lying through her teeth. No ifs, ands, or buts about it. In every session, she talks about how Jani is doing better. Sometimes, she will say that Jani had an issue, but she worked through it. Just last week we had been working on a goal plan where she had put down a goal was to keep Jani out of the hospital for longer periods. Now she was saying that Jani wasn’t getting any better.
Any respect I had for her vanished in that moment. “That’s not what you’ve been saying in the sessions. You are only saying different now because your boss is sitting next to you and you don’t want to contradict him.”
“Michael…” she said sternly, like I was her student, but her boss cut her off.
“We are an outpatient clinic.”
“What does ‘outpatient’ mean?”
“It means one day a week.”
Ah, so that’s what this was.
“You want to stop the three times a week therapy, don’t you?”
“We have just talked about how dependent Jani is on structure and you want to cut back her therapy because it is costing too much.”
“It’s not about money.”
“So you just want to give up on her then!” I was furious. I had never yelled like this in an IEP meeting before. Usually it is Susan yelling, not me. I am usually the calm one, the mediator, but I had finally had enough. My daughter’s therapist for the past two years, who just last week had agreed to coordinate her vacations with the Newhall occupational therapist so that both weren’t gone at the same time, was selling Jani out because she didn’t have enough of spine to stand up to her own boss. It made me realize that she’d never really cared about Jani at all. What she cared about going along with the man upstairs, and I’m not talking God.
What she doesn’t know is that Susan made an audio recording the day that Jani tried to cut her wrists with a piece of serrated metal in the waiting room of the Child & Family Center. Since Jani’s therapist constantly claims to be clueless to Jani trying to hurt herself, Susan wanted to record what she said. The recording will never see the light of day because it was taken without consent, but I have listened to it, and on it Jani’s therapist says that Jani is doing well and everything was fine once Jani got into the session with her.
Didn’t your mother ever teach you not to lie?
Either the therapist was lying to us, trying to downplay Jan’s self-injurious behavior to protect the Child & Family Center who failed to take any action to help Jani, or she was lying to go along with what her boss said. I think it is a combination of both. I think all she cares about is keeping her cushy job with the Child & Family Center and she will sell Jani up the river to do that.
I bluntly said, “I want to know if you are going to keep doing the three days a week therapy.” Mr. Levy, VP of Programs, answered, “If we have to, we will.”
“You have to. AB3632 requires Jani to receive any services that contribute to her education, and her therapy does.”
“Then we will,” he answered evenly, a twinkle in his eye. “You know, I want you to know that I like you.”
“Flattery will get you everywhere,” I answered wryly.
“No, I mean it. You are most determined, committed, and obviously loving parents I have ever seen.” He stood up and extended his hand.
I shook it. Her therapist, I realized, was already out the door. I realized what was happening. Dr. Levy, despite our fighting, respected me. I had battled them as well as any educational attorney or advocate, better even, because I was the father. He had come to realize what the Newhall School District came to realize a long time ago but still needs the occasional reminder: Susan and I aren’t going to just go quietly away. We will fight for Jani, and we will fight for another mentally ill children, until we have no breathe to fight anymore.
He was shaking my hand because he acknowledged a worthy adversary, although I am sure he wouldn’t put it like that. Men are like that. We can yell at each other and even come to blows but still respect each other. He respected me for holding my ground and calling his therapist out.
I noticed he made no effort to defend her, unlike Dr. Fine who always defends his staff. I have no doubt that nothing is going to change at Child & Family, but at least they know I won’t kowtow to them.
I wonder if Jani’s therapist is thinking about why her boss didn’t defend her to me, even though she went along with the program.
My answer to her would be to ask if she has you ever read “Yertle the Turtle” by Dr. Suess?
On the far-away island of Sala-ma-Sond,
Yertle the Turtle was king of the pond.
A nice little pond. It was clean. It was neat.
The water was warm. There was plenty to eat.
The turtles had everything turtles might need.
And they were all happy. Quite happy indeed.
They were… until Yertle, the king of them all,
Decided the kingdom he ruled was too small.
“I’m ruler”, said Yertle, “of all that I see.
But I don’t see enough. That’s the trouble with me.
With this stone for a throne, I look down on my pond
But I cannot look down on the places beyond.
This throne that I sit on is too, too low down.
It ought to be higher!” he said with a frown.
“If I could sit high, how much greater I’d be!
What a king! I’d be ruler of all that I see!”
So Yertle the Turtle King, lifted his hand
And Yertle, the Turtle King, gave a command.
He ordered nine turtles to swim to his stone
And, using these turtles, he built a new throne.
He made each turtle stand on another one’s back
And he piled them all up in a nine-turtle stack.
And then Yertle climbed up. He sat down on the pile.
What a wonderful view! He could see ‘most a mile!
“All mine!” Yertle cried. “Oh, the things I now rule!
I’m the king of a cow! And I’m the king of a mule!
I’m the king of a house! And, what’s more, beyond that
I’m the king of a blueberry bush and a cat!
I’m Yertle the Turtle! Oh, marvelous me!
For I am the ruler of all that I see!”
And all through the morning, he sat up there high
Saying over and over, “A great king am I!”
Until ‘long about noon. Then he heard a faint sigh.
“What’s that?” snapped the king,and he looked down the stack.
And he saw, at the bottom, a turtle named Mack.
Just a part of his throne. And this plain little turtle
Looked up and he said, “Beg your pardon, King Yertle.
I’ve pains in my back and my shoulders and knees.
How long must we stand here, Your Majesty, please?”
“SILENCE!” the King of the Turtles barked back.
“I’m king, and you’re only a turtle named Mack.”
“You stay in your place while I sit here and rule.
I’m the king of a cow! And I’m the king of a mule!
I’m the king of a house! And a bush! And a cat!
But that isn’t all. I’ll do better than that!
My throne shall be higher!” his royal voice thundered,
“So pile up more turtles! I want ’bout two hundred!”
“Turtles! More turtles!” he bellowed and brayed.
And the turtles ‘way down in the pond were afraid.
They trembled. They shook. But they came. They obeyed.
From all over the pond, they came swimming by dozens.
Whole families of turtles, with uncles and cousins.
And all of them stepped on the head of poor Mack.
One after another, they climbed up the stack.
Then Yertle the Turtle was perched up so high,
He could see forty miles from his throne in the sky!
“Hooray!” shouted Yertle. “I’m the king of the trees!
I’m king of the birds! And I’m king of the bees!
I’m king of the butterflies! King of the air!
Ah, me! What a throne! What a wonderful chair!
I’m Yertle the Turtle! Oh, marvelous me!
For I am the ruler of all that I see!”
Then again, from below, in the great heavy stack,
Came a groan from that plain little turtle named Mack.
“Your Majesty, please… I don’t like to complain,
But down here below, we are feeling great pain.
I know, up on top you are seeing great sights,
But down here at the bottom we, too, should have rights.
We turtles can’t stand it. Our shells will all crack!
Besides, we need food. We are starving!” groaned Mack.
“You hush up your mouth!” howled the mighty King Yertle.
“You’ve no right to talk to the world’s highest turtle.
I rule from the clouds! Over land! Over sea!
There’s nothing, no, NOTHING, that’s higher than me!”
But, while he was shouting, he saw with surprise
That the moon of the evening was starting to rise
Up over his head in the darkening skies.
“What’s THAT?” snorted Yertle. “Say, what IS that thing
That dares to be higher than Yertle the King?
I shall not allow it! I’ll go higher still!
I’ll build my throne higher! I can and I will!
I’ll call some more turtles. I’ll stack ‘em to heaven!
I need ’bout five thousand, six hundred and seven!”
But, as Yertle, the Turtle King, lifted his hand
And started to order and give the command,
That plain little turtle below in the stack,
That plain little turtle whose name was just Mack,
Decided he’d taken enough. And he had.
And that plain little lad got a bit mad.
And that plain little Mack did a plain little thing.
And his burp shook the throne of the king!
And Yertle the Turtle, the king of the trees,
The king of the air and the birds and the bees,
The king of a house and a cow and a mule…
Well, that was the end of the Turtle King’s rule!
For Yertle, the King of all Sala-ma-Sond,
Fell off his high throne and fell Plunk! in the pond!
And today the great Yertle, that Marvelous he,
Is King of the Mud. That is all he can see.
And the turtles, of course… all the turtles are free
As turtles and, maybe, all creatures should be.
Who is Yertle in this case? Is it Jani’s schizophrenia? Maybe. Or maybe it is the system. They are both the enemy. And Jani’s therapist is one of the turtles way down in the pond who is scared, who trembles, who shakes, but who comes, who obeys, who stands on the turtles below her (other patients), while other turtles (her bosses) stand on her back.
And who is Mack, who keeps trying to remind Yertle that the turtles at the bottom have rights, too? Is it me? Is it Susan? Is the over hundred other parents of mentally ill children who are in my support group? Is it Jani? Is it all the kids out there like her, who are suffering through a horrible illness that would break these therapists in two?
We are all the plain little turtles way down in this stack. We are all the plain little turtles whose name is just Mack.
That’s why the seventy-five cents means so much to me. It was given by someone who had nothing to give, yet she gave anyway.
Seventy-five cents is act of defiance. It means that this woman knew what it meant to give everything in support of something bigger than herself.
Seventy-five cents is like Rosa Parks refusing to get up and move to the back of the bus. Parks was just tired, but that small act of defiance changed the United States forever.
Every time I post updates on Facebook, I always get expressions of sympathy, which I do appreciate. Often it will be something like “I hope one day things change.”
Things do change, and they change because one person decides he or she has taken enough.
Jani’s taken enough, and I know your children have to. You and I have taken enough.
And we are getting a little bit mad.
And we plain little parents of plain little mentally ill children can do a plain little thing, just like Rosa Parks did.
We can say “no.”