I get a lot of comments on my blogs and often times those comments include questions. Most of them are easy to answer, so easy that if so inclined I could give a one word answer:
Do you think Jani might be possessed by (insert your culture’s version of “demons” here)?
Do you think Jani’s symptoms might be caused by (insert bacterial infection here)?
Have you tried (insert crackpot “cure” here)?
Two letters. Very simple.
But every so often I get a question or questions like the ones below. I will bold the relevant questions.
I have a few questions, just because I’m curious, if you don’t mind. I’m wondering, if you know, what the long term outlook is for a person with childhood onset schizophrenia? Are the issues of these kids as adults similar to those who have schizophrenia starting in adulthood or do they get better/different?
What are your plans, if any, for Jani as she reaches her teen years and early adulthood? Can kids like Jani be kept safe in the home with the parents once they are bigger and more independent?
My best friend during my teen years was mentally ill. I don’t know what her diagnosis was but I believe that she was bi-polar. It had been obvious even as a small child that there was something wrong with her. She only spent about a week in a regular 1st grade class before she was moved to what they called a “therapy school”. At 13 her mother couldn’t handle her anymore and she went into a group home and started on a road going from group home to foster home to institutionalization. It didn’t go well. She just got worse. She once got mad at me and started to stab herself with a pair of scissors. She was very self destructive. She eventually became a hardcore heroin addict and last time I saw her she looked horrible. Her clothes were dirty and she had hair down to her waist that looked like it had not been brushed for weeks. It was a sad sight.
I know that both her parents had tried very hard to help her and a lot of resources had been used on her to no avail. Despite all of this she still went downhill. How do you prevent that from happening to kids with mental illness like my friend and Jani? What have you seen with families that have gone before you and now have adult kids?
You are probably just taking a day at a time with Jani and it’s impossible to know what she will be like five years from now. I’m curious though if you have any kind of tentative plan for her when she’s 15-16 and on?
Of course this stuff is really none of my business. It’s just something I started to think about while reading some of your blog and I thought it doesn’t hurt to ask.
Keep up the good work! I think you and your wife are doing great.
Excuse me for a moment while I pick myself up off the floor.
There was no way the young lady who asked these questions could have known what the impact they would have on me. She meant no harm, but she might as well have hit me with her car at 60mph., leaving me dazed and bloodied by the side of the road.
Except that she was nice enough to stop and come back for an answer.
You see, she didn’t ask just ANY old question. She asked THE question, the question that haunts all of us who have a severely mentally ill child, the question that hovers around us like a wasp that we are trying to ignore, the question that all of do our damndest not to think about. It is a question so hard that if you dare to think about it, the consequences for your own life can be dire. It is the question that drives some parents to run away, that drives others into addiction, be it alcohol, heroin, meth, prescription pain killers, dangerous sexual behavior, or any other mind-numbing activity such as watching baseball on TV (my personal choice).
Yeah, it’s that bad. It is the ultimate question we fear.
And you had to go ask it. Dammit, the Angels aren’t playing tonight.
You’re gonna make me answer you, aren’t you? Fine. Let me go have a cigarette first. Or two. I’ve been chain smoking since I started this blog, which keeps forcing me to go outside on our balcony. But what I am really doing is stalling. I’m not sure if I’m stalling because I don’t have the answers or because I don’t like the answers. Probably a combination of both.
First, let me explain how I think about the future. For me, the future is tomorrow morning, when Jani and Bodhi wake up. Then the future will be tomorrow night. I am writing this on a Thursday. The weekend is the future because I have to think about how I am going to get the kids through the weekend. And then next week, the gap week between the end of the school year (today) and the beginning of summer school.
That’s about it. Everyday somebody I run into will say “You have a book coming out soon, right?” I stare at them blankly for second until I remember that yes I do have a book coming out and I will struggle to remember the date. Oh, yes, August 7th.
Astronomers estimate that in approximately four billion years from now, our sun will expend its supply of hydrogen. As its mass decreases, it will lose the gravity that holds it together and it will begin to expand, consuming all the inner planets, including Earth.
Do you care?
Of course not. Because 4 billion years is a length of time you really can’t conceive of. It’s meaningless to you.
August isn’t quite 4 billion years for me. Perhaps a closer analogy might be 180 million years, when the continents collide again into another supercontinent.
When your future largely consists of tomorrow, maybe even just tomorrow morning, you don’t have time to think about events beyond that you know might happen but right now are meaningless, like the death of our sun.
Next, I will give you my well-versed answer about the future. What did you want be when you grew up when you were five years old? A teacher? A firefighter? An astronaut?
Are you doing that now, or on your way to doing it?
I have only ever met one person who now does for a living what he wanted to do in high school (commercial airline pilot).
In kindergarten you know EXACTLY what you want to be when you grow up. By the time you get to your freshman year in high school, you have no idea.
So what happens in the intervening ten years? Why did you stop wanting to be an astronaut?
That’s a tough one to answer, isn’t it? The short answer is “I grew up,” which is really a nice way of saying “shit happened.” Maybe math got harder. Maybe your friends didn’t want to be astronauts.
But basically what happened is life happened. Things changed. Things got more complicated. As you grew older, everything that you thought you knew about the world and your place in it got called into question. You became more unsure of yourself. Maybe your parents split up. Maybe you had to take care of a younger sibling. Maybe you had to go to work to support yourself or help out your family. Maybe you got knocked up by the first boy to tell you he loved you.
In a word, reality hit.
And you adapted, as humans do. You adapted and survived. You changed your goals to fit the situation you found yourself in.
In essence, what happened to me and Susan is simply a slightly more extreme version of that. Jani was born. Circumstances changed and we adapted. The two apartments for two years? Adapting. Humans generally adapt to their environment, as does all life.
So that’s another excuse for not thinking about the future: no matter what plans we make, circumstances will change and we will have to adapt. Which makes planning kind of pointless.
That’s my story and I would have stuck with it except that you had to ask about Jani’s future and the future of kids like her.
Okay, enough beating around the bush. Let’s get down to brass tacks, shall we?
I’m wondering, if you know, what the long term outlook is for a person with childhood onset schizophrenia?
Short answer: Unknown
Essay answer: The long-term outlook for a person with child onset schizophrenia is unknown because there have been no long term studies conducted (and to my knowledge there are none currently going on). There are multiple reasons for this. The history of treatment of mental illness has a checkered past, particularly in Europe and America. Muslim doctors at the turn of the first millennium were actually the first to speculate that symptoms of mental illness were of biological origin. In medieval Europe, what we would today consider the mentally ill were either burned at the stake or, later, locked away in dungeons, which became the first “sanitariums.” By the 18th Century, the mentally ill were usually locked away with people suffering from tuberculosis or terminal syphilis. It wasn’t until the 19th Century that the British created the first sanitariums specifically for the mentally ill. Since medications did not yet exist, there was no “treatment” in the modern sense. In the late 19th Century, what came to called “psycho-surgery” came into fashion, better known as the lobotomy. Yes, it was like curing a scratch on your arm by amputating your entire arm but it was nonetheless the first active attempt to “treat” the mentally ill.
The first anti-psychotic medications appeared in the 1940s, with Thorazine being the revolution that ended the practice of lobotomies. Thorazine and Haldol were the most responsible for the “de-institutionalization” of the mentally ill.
There are records of children being in sanitariums dating back to the 19th Century, although the reasons why are unclear. Despite child onset schizophrenia appearing to be “new,” there are records of children ten or even younger being institutionalized “with psychotic symptoms” from the turn of the 20th Century through the early 1990s and the closure of nearly all state run mental hospitals. To doctors working in state run institutions in the 1960s and 70s, seeing children with schizophrenia was not uncommon.
So why are there still doctors who insist children cannot develop schizophrenia? Because they weren’t around back then. They came up through the medical system in the post institutional era and so unless they work in a teaching hospital like UCLA’s Resnick Neuropsychiatric Hospital they have probably never seen it. It is human nature to deny the existence of that which we have never seen. The ancient Greeks though the dark spots on the moon were oceans (hence the reason why Apollo 11 landed in the “Sea of Tranquility”). It wasn’t Galileo invented a more powerful telescope that humans got their first good look at the surface of the moon and realized there were no oceans. My point is that doctors, therapists, school psychologists don’t know what they are seeing until they get a closer look.
So why no studies of the long term outlook? There are several reasons. First, the primary focus of psychiatry, like all medicine, is to alleviate symptoms of the illness, not study it. Second, child onset schizophrenia, like adult schizophrenia, is not a popular area of research because, well, there’s not a lot of money in it. If you want to study breast cancer or prostate cancer, you can find dozens, even hundreds of foundations that will fund your research, not to mention the federal government’s NIH (National Institute of Health). Diseases that only afflict a small minority, even physical diseases, simply don’t get the funding. There is a study at Duke tosequence the DNA of children with schizophrenia and compare it to their parents, the purpose being to look for what are called “deletion events” (missing DNA strings) or, vice versa, extra DNA strings (since most DNA passed from parent to child unchanged, even accounting for the occasional mutation). They have sequenced Jani’s DNA but lack the funding to do so for me or Susan. Right now they are trying to get another grant from the National Institute of Mental Health (NIMH). So researching schizophrenia in children is not a popular area of study because of lack of money, prestige, and recognition.
Another reason there are no long term studies is the simple but significant problem of finding a study group. Leukemia is easy to diagnose. Schizophrenia in children is not, due to resistance from doctors to label a child with the worst mental illness known to mankind, the difficulty parents and caregivers have in even obtaining care (getting Medicaid or private insurance to pay for mental health care, particularly inpatient, is like pulling teeth), and the fact that because many symptoms of schizophrenia are also symptoms of autism, bipolar, or ADHD, many kids go years before getting diagnosed. For that reason, many are not diagnosed until their teen years, which is another reason why child onset seems so rare. Yet every adult person with schizophrenia I have ever talked to admits to having symptoms as a child (perhaps not as severe as Jani but still there).
For all these reasons, nobody has started a study on children diagnosed with schizophrenia when the intention of following them into adulthood. There simply isn’t enough of them and this area of research is just not a priority in our society at present.
In the end, the outlook varies from child to child and is dependent on how well the respond to medication (the better the medication works, the better the outlook), plus environmental factors such as family and home stability and support.
Are the issues of these kids as adults similar to those who have schizophrenia starting in adulthood or do they get better/different?
Short answer: No and no.
Essay answer: The outlook is better for those who develop schizophrenia later in life. This is because if schizophrenia sets in during the late teens or early twenties, brain development is nearly complete (most brains finish “growing” at about 25). This means that if the young adult or adult is able to get treatment fast enough, they have a very good chance of making a near complete recovery (no one ever makes a “full” recovery-anyone that tells you they have is either lying or delusional). This is because they have more “tools” at their disposal when they become symptomatic. They already have some social skills in place. What makes child onset worse is that it essentially robs the child of normal social and cognitive development. Jani’s illness hit her before she’d had the change to develop social skills, which, at least socially, perpetually puts her behind the eight ball. Now that Jani is relatively stabilized by medication, her social and cognitive development is picking up right where it left off. The nice thing about medications and the reason I encourage them is that, over time, they can undo the worst of the damage done by the schizophrenia, which is now believed to be a degenerative brain disease similar to Alzheimer’s.
In the end, a child with schizophrenia can make huge achievements. It just takes them longer because much of their formative neural and social years have been lost.
What are your plans, if any, for Jani as she reaches her teen years and early adulthood?
Puberty is the great unknown. Doctors never have any idea what will happen to a child with a severe mental illness as they enter puberty. They can get better. They can get worse. Frequently, medications must be adjusted around this time, both dosage and type. One thing I didn’t mention above is that adults tend to respond much better to the newer “atypical” anti-psychotics (which have fewer side effects) than children, who, for reasons not yet understood, tend to respond better to the older “typical” anti-psychotics like Thorazine and Haldol. The problem, and it’s a huge problem, is that their bodies often can’t handle the high doses necessary to calm the psychosis, sending them into what is called “dystonia” (muscle spasms or locking) or, long term, tardive dyskinesia (permanent shaking). It is a hell of choice to have to make: Poison the body to save the mind or let the mind go to save the body. We chose the former because if the mind goes, the body will likely follow.
Our plans for Jani are this: We are not pushing academics. She does as much school as she can do. I think she is capable of getting a high school diploma (although I don’t think she will ever be able to function in a mainstream classroom) but college? I doubt it. I mean, if she can, great, but I’m not planning on it. I don’t know if she will ever be able to live completely independently. I have no issue with her and Bodhi staying with us as adults. What Susan and I must do, and this is why I hope the book is successful, is buy a safe home, perhaps a farm, outright where Jani and Bodhi can live after Susan and I are dead and gone. I cannot leave this earth until I know they will be taken care of. I want to buy them a home and set up a trust that will pay property taxes and utilities in perpetuity. We are doing our best to make sure Jani understands that she must always take her medication. That is probably my biggest fear: that once I am dead or incapacitated that there will be no one to make sure Jani takes her medications. This is why I would like to get Jani together with Briana and other girls growing up with schizophrenia. I hope they will take care of each other when we are all dead and gone.
In the end, my plans haven’t changed: Keep Jani alive and find her as much happiness as I can. I want her to keep wanting to live, wanting to keep fighting her illness.
Can kids like Jani be kept safe in the home with the parents once they are bigger and more independent?
This depends on the child and it depends on whether the child’s level of violence decreases as they get older. Jani’s has, for the time being. However, I know other parents who had little boys who are now 12, 14, 16. It’s easier to take the blows when they are little. It gets harder when they get bigger. I know one mother just got her nose broken by her son. This is why I am such a big believer in Thorazine. It works very well against the violence.
I will always keep Jani with us. I can’t imagine life without her. Bodhi is growing up. Right now Jani is not violent. I pray the violence does not return or if it does that we can treat it quickly.
How do you prevent [becoming a homeless drug addict] from happening to kids with mental illness like my friend and Jani? What have you seen with families that have gone before you and now have adult kids?
For me, the key to answering this question is what you wrote here:
“At 13 her mother couldn’t handle her anymore and she went into a group home and started on a road going from group home to foster home to institutionalization. It didn’t go well.”
This is where we come to the “nurture vs. nature” impact on mental illness. It is entirely possible that your friend would have wound up a homeless heroin addict no matter what her mother did.
But….based on my albeit small sample and what I have been told by the head of UCLA’s Adolescent Psych Unit, sending a mentally child “away” increases the likelihood of this particular outcome by about fifty percent, particularly the closer to age 18 the child returns from what is called “residential treatment.” Because state hospitals no longer exist, the only remaining alternative if you are unable to keep your child in the home is residential treatment. The problem with these places is that they are not terribly therapeutic (I can already envision the angry parents who are going to lay into me on this one). They are not medical treatment facilities. They all follow what is called “behavior modification,” which is a system of reward and punishment for good and “bad” behavior, respectively. The problem is that child who suffers from psychosis cannot control their behavior. Yes, they are aware that what they are doing is wrong but they are compelled to do it. By nature, humans, like all animals, are conditioned to avoid pain. You put your hand on a hot frying pan. The nerves in your hand send signals to your brain, which interprets those signals as pain and responds, retracting the muscles to pull your hand off the frying pan. The problem with all psychosis is that it scrambles the signals between the body and brain. This is why you will see homeless people wearing six jackets in one hundred degree heat. They literally do not feel it. This is also why a taser will not bring down someone who is psychotic. They do not feel the pain because the body cannot communicate effectively with the brain and vice versa. Behavior modification will not work in a child (or adult) in active psychosis because they are locked within an internal world that prevents them from recognizing what is happening to them. That is why your friend didn’t care that she was dirty and unkempt. With psychosis, personal hygiene is one of the first things to go.
But in the end, although I would never endorse residential, I am a man dealing with a psychotic daughter. I am not a mother trying to defend herself from her sixteen year old son who is a head taller and fifty pounds heavier trying to kill her because the voices in his head are telling him she is the enemy. Circumstances must always be taken into consideration. We were lucky, which I always acknowledge. We were able to keep Jani (who was then a threat to the safety of Bodhi) through the goodness and graciousness of complete strangers who donated money so I could maintain the two apartments. Not everyone has that option. Not everyone gets their story in the LA Times or gets on Oprah.
Ultimately, whether the child goes to residential or not, the single biggest factor in the future of a mentally ill child is the involvement of the parents. If the parents don’t give up, there is a good chance the child won’t either. Showing your child that you love them, will always love, and will always be there for them is the best way to prevent what happened to your friend. If her mother truly did “give up” emotionally on your friend, that more than anything is why she ended up the way she ended up. And I have to tell you she will probably die, sadly.
You are probably just taking a day at a time with Jani and it’s impossible to know what she will be like five years from now. I’m curious though if you have any kind of tentative plan for her when she’s 15-16 and on?
Yes, we are. I don’t know where we will be in five years. I know she is my daughter and part of my family and I will pay any price to keep my family together. The elementary school district she is in has been fantastic in working with us to create a completely unique program for Jani. They gave her time and space, letting her work one on one with a teacher. Next year (fifth grade) we are going to try her back in her special ed class for a half day each day and see how she does, something that even a year ago I thought she would never be capable of. She has two more years in this district and then passes to the high school district. Whether she continues at that point depends on how comfortable she feels and how willing to work with us the high school district is. The key to keeping the psychosis at bay is keeping Jani’s stress level down and stress only grows as you get older. I do worry about that. We may homeschool at that point. But to be honest, whether she learns anything is immaterial to me. I just want her to be happy. Jani has no friends locally. She still constantly talks about her hallucinations as if they are real and she tends to repeat questions over and over again (her way, I think, of trying to fix reality in her mind). Connecting with neurotypical kids her age is pretty much impossible. There are other girls like her but they are spread out across the country.
But she does like older kids, teenagers, because they are nicer and more tolerant. And like any normal nearly ten year old girl, she is starting to like boys.
Four years ago, I never thought Jani would ever reach this place. I never thought I would ever have to worry about boys. And that feels pretty good.
Jani will never be a completely typical kid/teen/adult. But she is carving a life out for herself and we will be there every step of the way.
If I have learned anything about life, it is this: Life is tenacious. Despite all attempts to destroy it, it hangs on, even in places you would never expect.
And it never ceases to surprise me.