A family living on the edge

MICHAEL SCHOLFIELD
Last updated 13:48 27/08/2012
janni
Scholfield Family
DADDY'S GIRL: Michael Scholfield and his daughter, Janni.

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The first weeks of Janni's life, my wife, Susan, and I are taking lots of home video, imagining her watching these tapes alongside us and her friends as a teenager, pretending to be mortified, but happy on the inside knowing how important she's been to us from the beginning.

About a week into her life, she stops sleeping, aside from 20 to 30 naps within a 24-hour day. We're still recording, though. We don't want to miss anything, although we do need to sleep at some point. She screams constantly when she's awake, but again, she'll probably find this amusing when she's a teenager watching all of this.

A couple of weeks go by and she's still not sleeping for even one hour straight. Nothing is comforting her, so it must be colic - the only possibility we'd heard of that keeps babies awake and constantly screaming at this age.

We tell our paediatrician that Janni is getting a total of four to five hours of sleep a day. "Some babies are active and some are passive. Yours is very, very active," she says, studying Janni's un­usually alert, big blue eyes staring back at her.

We leave somewhat relieved, but still have to figure out what to do. This doesn't seem right, but the paediatrician keeps telling us everything is okay. In order to get any sleep, we start taking Janni in five-hour shifts, one parent "on duty" while the other sleeps, then reversing.

Before Janni was born, we were given baby toys by family and friends. Most of them are for six-, nine- or even 12-month-olds. I didn't expect to use them for months, but if I can get her focused on something, she stops screaming.

One toy has three shapes on it: a red square, a blue triangle and a yellow circle. When switched on, the toy asks, "Find the red square." I still remember sitting in our easy chair, half-asleep, holding my three-week-old daughter as she bats away at the toy. "Find the yellow circle ... Correct. Find the red square ... Correct." Through the fogginess of my exhaustion, I become aware that she's hitting the right shapes and colours. I look down, thinking it must just be coincidence.

"Janni, where's the yellow circle?" I ask, watching her arm stretch out, fist closed, as if struggling to make her body do what she wants it to do.

"Correct," the toy announces.

No. It can't be. She's not even a month old. "Janni, press the blue triangle."

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"Correct," the toy announces.

Oh my God.

At 13 months, Janni can recognise any letter in the alphabet, even upside down or sideways. By 18 months, she's speaking in grammatically correct sentences and learning basic addition. Plus, she's sleeping now, but that's because we discovered that taking her out every day, all day long, gets her tired enough to sleep through the night. It's not enough for us to wear out her body. We have to wear out her mind.

Fortunately, by being out all the time, we meet other parents and go on playdates. But after a few hours at the zoo or park, the other parents take their children home, while we have to remain out. There's no over-stimulating Janni.

When Janni is two, I come home from work to find out that Susan has been teaching Janni subtraction and Janni asked, "Mummy, what's four minus seven?"

I'm stunned. Negative numbers are a totally abstract concept. They don't exist in the real world. You can't "see" negative three apples. At two years old, Janni's mind is making the leap from concrete reasoning to abstract thought.

Our daughter is a genius. I can see her going to Harvard or Yale before she's a teenager. I can see her winning a Nobel Prize.

IMAGINARY WORLD

Janni's first imaginary friend is a dog called "Low" and appears just before her third birthday. I don't think anything of it. Kids have imaginary friends, but more come - an orange tabby cat, "400", and seven rats named for each day of the week. There's even a human girl with brown hair she calls "24 Hours". As more keep coming, I eventually lose count.

This is just a figment of her huge imagination, so we go along with it until she starts changing her name several times a day, telling the mums in our mothers' group to call her "Rainbow" or "Hot Dog". They can't keep up and neither can their children. I assume this is all part of her eccentricities that come from being a genius and she'll outgrow it. But in the meantime, she needs to pick one name, any name, and use it as a nickname. She settles on "Blue-Eyed Tree Frog".

I play along with her imaginary friends who live in "Calalini", which I believe to be a derivative of Catalina Island, which I had recently taught her about. I may not like the way she's rude to others, but I still don't want to restrict her imagination, for fear of shutting down her genius. But I overhear the mothers suggest to Susan that Janni may have autism or Asperger syndrome.

Inwardly, I bristle at this. First, autism is the diagnosis du jour - like hyperactivity was when I was a kid. Second, I believe these parents want to see something wrong with Janni because it's easier for them to accept than that their kids are just average.

Eventually, I relent and let Janni be evaluated by a therapist who's an expert in autism spectrum disorders (ASD). She immediately rules out ASD because Janni is too engaging, and wants her to do an IQ test. Janni scores 146 out of 150, the highest the test can calculate. The therapist tells us that, at age four, Janni is mentally between 10 and 11 years old, and this is where all our problems will come from. Her advice is to enrol Janni in a school for extremely gifted kids, but Janni is still not potty-trained and screams if anyone mistakenly calls her by her given name.

Susan is still trying to find other children with high IQs, but even when she does, they don't act like Janni, nor do they understand her imaginary friends or Calalini. The conversation always ends with Janni saying, "They don't get my imagination. I'm going to play with 24 Hours and 400 the Cat instead."

I'm angry at Susan for forcing this socialisation. All she's doing is making Janni feel like a freak. Janni is the happiest when it's just her and me because I play along with her imaginary world. I don't care if she shuts everyone else out, as long as she doesn't shut me out.

One night we take our dog, Honey, to run on the golf course fairway behind our apartment complex. It's an oddly clear sky, so I try teaching Janni about the stars, but she interrupts me, saying she misses 24 Hours. She's sincerely sad.

I don't get it. If 24 Hours is a creation of Janni's, she should be around whenever Janni wants her to be, but Janni tells me 24 Hours has "gone home to Calalini".

Susan and I agree to have a second child. If we can't find another child like Janni, maybe we can create one. Maybe what Janni needs to reawaken her lust for life is a sibling?

Janni continues to get worse during Susan's pregnancy. Along with screaming, she has started to throw things and hit. But I remain confident that once the new baby arrives, everything will be okay.

BEHIND BLUE EYES
Bodhi is born on December 17, 2007. Unlike Janni, he sleeps, which is good, because we are terrified to let him make a sound. When he cries, it's like somebody threw a switch in Janni: her normal personality is turned off and she becomes like a machine who will not stop trying to hurt him.

Several times a day, I have to hold her down on the bed, restraining her to keep her from going after him. When I hold her arms, she kicks me in the shins so hard it feels like someone is smashing a baseball bat into them. Her feet are bare and I worry that she will break her toes on my shins, but she seems oblivious to pain. One day, when I get her down and put my leg over hers to lock them down, she uses the last weapon she has, her teeth, biting down on my chin so hard it takes my breath away.

I never get angry because I know this cannot possibly be my daughter. My daughter has been a vegetarian all her life because she doesn't want to hurt animals. My daughter makes me fish drowning bees out of the swimming pool.

I try not to look in her eyes during these terrible moments, because I know what I will see - a vacancy, as if she is looking through me. She doesn't see me as her father. I am just an object stopping her from her goal, which is hitting Bodhi. She insists she can hear him crying even when I hear nothing. And then, suddenly, it passes, and her eyes return to normal and she wants to eat.

We have to get help. It's Christmas week and most child psychologists are on holiday, but there is one who is willing to see us.

At first sight, she chalks Janni's behaviour up to normal jealousy of a new sibling - until Janni starts hitting Susan simply because she's bored and wants to go. Janni hits Susan hard enough that it sounds like a tennis ball bouncing off a wall, yet shows no emotion. The psychologist appears shocked. She immediately refers us to a child psychiatrist, telling us that even though it is almost New Year's, she will convey to the psychiatrist that "this is an emergency".

Emergency? Okay, yes, we have to take two cars everywhere we go - one for Janni and one for Bodhi because otherwise, when he cries, Janni goes after him.

The first time schizophrenia comes up is when the psychiatrist, Dr Howe, asks us about our family histories. Susan's great-uncle spent most of his life in a mental institution for schizophrenia. "Schizophrenia?" I think to myself. "That's what those people who rave to themselves on street corners have. Janni doesn't have schizophrenia."

I look to Dr Howe to dismiss this, but all she says is, "Let's not go there."

I want some sort of answer, but Dr Howe won't give one other than "anxiety". I'm used to doctors knowing immediately what is wrong.

"The important thing is to treat the violence," she tells us, and prescribes an anti-psychotic drug. I still can't believe this is happening, but we can't go on living like this. We are desperate, so we will try anything.

Over the next three months, half-empty bottles of medications pile up in our cupboards - medications tried and abandoned because they don't work. I'm taking Bodhi with me early in the mornings when I leave for work so that by the time Janni wakes up, he will be gone. Usually I drop him off with Susan's old roommate. If she's not available, I take him to the university where I teach and let the English department staff take care of him.

Dr Howe sends us to a neurologist to rule out any possible physical cause. I work desperately to get Janni through an EEG, hoping to see something, anything, to explain her behaviour. As much as I hate myself for it, I would be almost relieved to discover a tumour, because at least that would explain this thing that takes over Janni several times a day. But there is nothing.

At the same time, I'm getting increasingly afraid Susan will take Janni to an in-patient psychiatric ward. I can handle the violence - being hit, kicked, having things thrown at me - but I can tell Susan is losing it. Even Janni tells me one evening that she thinks she needs to go to the hospital because she can't stop hitting. I get angry at Susan, believing she is putting this idea in our daughter's head.

MIXED MESSAGES
It's Sunday, March 9, 2008 - I'm at the dog park, Bodhi strapped to my chest while Honey runs - when I get the call from Susan.

She has told me she and Janni were going to have a "girls' day out". I'm watching the dogs, sadly remembering that Janni used to love this place. But I can't bring her here any more. If a dog playfully jumps on her, she takes it personally, going after the dog, trying to hit it with a stick. Being here with Bodhi instead of Janni is a painful reminder of how far we've fallen.

I expect Susan to tell me that they're eating at Janni's favourite restaurant, but instead she tells me that they are at an in-patient psychiatric hospital. I am furious at myself. I knew Susan was too weak. I never should have let her take Janni.

When I arrive there I'm in shock. Janni is among teenage girls on the unit, happier than I have seen her in years, clapping her hands excitedly as she says, "They get my imagination!"

For the first time, I have to face that this is something serious. Surely the doctor here will recognise what is happening to Janni and know how to stop it? Except it takes me days just to get him to return my calls. Where is the urgency? My five-year-old daughter is locked up in a psych ward and he's acting like this is no big deal.

The only thing that bothers him is that Janni tells him she has schizophrenia. He wants to know how she even knows the word, let alone what it is. He thinks we put the idea in her head. He insists she doesn't have schizophrenia because she is too coherent, too verbal.

Increasingly, I start turning on Susan, a trend that continues during Janni's second hospitalisation. She is weak: she can't handle Janni. In turn, Susan turns on me, blaming Janni's condition on my history of violent outbursts before I was on anti-depressants. We seize upon every failure we made as parents as the cause.

The doctor at the next hospital tells us that Janni is just fine and all she needs is for us to be stricter with her; he is convinced she'll be off all medication in six months. He is so confident. Maybe I was wrong always wanting to be Janni's friend. I screwed up. She needed a father, not a friend. If anything, I am probably the reason why she has no real friends.

I become the parent I never wanted to be. I give no quarter, dragging Janni into her room for the slightest infraction and locking her in there until she acknowledges what she's done.

But inside I'm losing my soul. I realise this when I catch Janni using her shirts to choke herself, and she asks me how she can break her own neck. Susan is terrified, but I dismiss it as her attempt to get out of enforcing time-out.

In order to function over the past six months, I have become so numb I can't react to anything. When Janni was a baby I would hover over her, ready to protect her from bigger kids. I used to defend her. Now I'm paralysed. I can't even bring myself to feel anything when Janni tries to jump out of her second-floor bedroom window one night.

"THERE IS NO CURE ..."
It's been a year since Dr Howe started seeing Janni and she's beginning to think it's the psychosis causing the mood, rather than the mood causing the psychosis. And I know it, too - ever since a few months earlier, when some kids came riding into the park on their scooters and Honey ran up to them.

I called out not to worry. Then Janni said, "Watch out for Wednesday! She bites." The kids reacted with fear, thinking Honey was Wednesday (instead of one of Janni's imaginary pet rats). Angrily, I told her Wednesday can't hurt anyone. She isn't real.

"Yes, she can," Janni answered solemnly. "She can hurt them in their head."

Janni has been telling me things like this for months. She's told me that the rats are afraid of Bodhi and that if she doesn't do what they want, they'll scratch and bite her in her head. I just didn't want to listen.

But now I realise her "imaginary friends" are in fact command hallucinations.

It takes Janni having an "episode" at school - where she runs out of class and tries to throw herself through doors and windows, and the police are called - before a doctor says: "We have ruled out everything but child-onset schizophrenia."

I don't press for other possibilities. I don't, because I know it is the truth. I've known for a long time. I just didn't want to face it.

There is no cure for schizophrenia. Janni will have it for the rest of her life.

I don't mourn for shattered dreams of Harvard or Yale or for the Nobel Prize. I mourn for Janni never being the big sister to Bodhi that we all wanted her to be. And I mourn for Janni herself.

Even her name has changed. At the next hospital, they print up the child patient's name along with an image of an animal or superhero the child likes. When they first printed up Janni's name outside her hospital room, they forgot the second "n", printing it as "Jani". She likes it, so it stays. I don't say anything, but it feels like the final severing of who she once was.

There is still no medication that will stop the hallucinations and violence without sending her into dystonia, a side effect of anti-psychotics that looks terrifyingly similar to a stroke. The doses she needs are more than her body can take. So she can't take them. After four months being an in-patient she slips further into Calalini, the manifestation of her schizophrenia.

I find her on the floor one night, staring up at the hospital ceiling lights, although whatever she is looking at is beyond them. She barely registers my presence. I get down on the floor with her and look up into the lights until dark spots obliterate my vision, desperately wanting to see what she sees, even though I know I can't.

My fear is that one day she'll go into Calalini and never come back.

STRIKING A DEAL
On my way home one night after Jani fails to recognise me, I call Susan and tell her to take Bodhi to her parents. I want to bring Jani home from the hospital and let whatever may happen, happen. Susan refuses. I love Bodhi, but he doesn't need me. I brought Jani into this world. I need to see her out [of it]. And when she goes, I will go, too.

But Susan will not give up. She comes up with a radical idea: trade in our two-bedroom apartment for two one-bedroom apartments, one for Jani and one for Bodhi. Susan and I will alternate nights between each child.

Bizarrely, this is actually what enables us to stay together as a family. This way Bodhi can grow up without fear and Jani doesn't have to deal with him. We can keep Bodhi safe and keep Jani with us. Our family starts to adapt to this new existence.

But something is still wrong - and it's with me. I have suppressed my fears and anguish for so long that I'm on the edge of the abyss, secretly scared of Jani's schizophrenia because it's stronger than I am.

After a misguided attempt to have a family day together, I crack, swallowing half a bottle of my own anti-depressants. I plan to drive off and let the pills do their thing. I'm almost a kilometre down the road when I stop. I can't do this. I can't abandon Susan, Bodhi and Jani. For the first time in years, I break down. I used to accuse Susan of being weak. But I am the weak one. It's my job to protect Jani from everything.

I reach a crisis of faith. I know I can't beat the schizophrenia. But maybe, just maybe, I can strike a deal with it. If the hallucinations dominate Jani's every waking moment, then I will share Jani with them. I'll treat them as real and talk to them. Jani already knows they aren't actually there and that I can't really see them, but I believe she appreciates the effort I make to understand the other world that she lives in every day.

PROGRESS REPORT
Over the past three years we've all come a long way. We've finally found a combination of medications that turn the volume down on Jani's hallucinations. The violence is largely gone and last October we were able to move back into a two-bedroom apartment after 2 1/2 years apart.

Along with the medication, Jani also has therapies that include horse riding, where she learns "vaulting" (trick riding) to give her confidence over her environment.

Her psychologist is working with her on the difference between "imagination" and "hallucination", which is helping us all build a bridge between Jani's world and ours.

I may never be able to take away Jani's schizophrenia, but I can keep the bridge strong.

Michael Schofield's January First: A Child's Descent into Madness and Her Father's Struggle to Save Her (Hardie Grant) is published this week.

- Sydney Morning Herald

 

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