16 Year Old Son Has Been Diagnosed With Psychosis
April 24, 2012 8:15 AM   Subscribe

16 Year Old Son Has Been Diagnosed With Psychosis NOS/ADHD/ODD. It's been a year and still no reason for the psychosis. Counseling (among other things - see inside) hasn't worked so far, medication keeps him calm for a short time... we don't know what else to do!

My son has been hospitalized twice in the past year. We have taken him to counselors, and they have not been terribly helpful (he's not always reasonable, and they talk to him about things that HE thinks he should be doing, when we've already told them that he's impaired and can't do those things, making him blame us, making him more angrier and defiant...). At his urging we sent him to public school (he has been homeschooled for pretty much his entire life), and they promised us the moon and starts, only to fail miserably - he picked up profanity, smoking, and other bad habits. Without getting too specific (trying to respect my son's privacy) we have already taken him to what is called the best local hospital for psychosis (you locals will know what I am referring to) and to a renowned local institution which specializes in learning challenges. What we don't have is recommendations from people who have been through this. I don't know what kind of counseling or testing to ask for, and it seems all the advice we're getting is making things worse!
posted by anonymous to Health & Fitness (14 answers total) 1 user marked this as a favorite
Have you contacted NAMI? They have programs specifically for supporting family members of the mentally ill. They should be able to provide you with some guidance.
posted by desjardins at 8:29 AM on April 24, 2012 [4 favorites]

Yeah, I was coming here to suggest NAMI also. They have state and local programs as well that might be more helpful to your specific situation/location.
posted by lurking_girl at 8:47 AM on April 24, 2012 [3 favorites]

If there's specific things he thinks he could do to help, and the counselors try to work with him on those things, why do you nix these things? It sounds like he's in an impossible situation.

Plus, it sounds like he may feel like you're going heavy on him. Teenagers curse. It's part of making your *own* way in the world - pushing boundaries, etc. I work in construction, so I still cuss like a fuckin' sailor. My sisters, who were known for their pottymouthes in high school, don't.
posted by notsnot at 8:49 AM on April 24, 2012 [4 favorites]

he picked up profanity, smoking, and other bad habits.

I want to very respectfully suggest to you that many people experiencing mental illness find smoking calming and self-medicating. The incidence of smoking among people with psychoses and schizophrenia is something like twice that among that in the general population; part of that is the culture of smoking in both inpatient and outpatient facilities, but there are studies being done about whether the actual intake of nicotine itself is an effective self-medication, and why, and how those benefits can be replicated without the health risks of smoking.

Certainly it makes sense that you don't want your 16-year-old son to smoke, but dismissing it as a "bad habit" that he "picked up" in public school rather than something that feels like a useful coping mechanism to him in his illness might be a counterproductive strategy.

Similarly with the "profanity"--as parents, you have the absolute right to set whatever boundaries around language you choose for your home, but testing those boundaries is a totally normal part of most adolescents' development. And a child dealing with a severe illness may have even less energy to devote to policing his word choice than usual.

If these "counselors" are religious in nature, may I again very very respectfully suggest to you that your son needs to see psychiatrists and secular therapists? I am picking up the vibe, perhaps totally wrongly, that one of the issues you are having with his illness is that his behavior doesn't conform to the standards you have set for your household guided by your religious beliefs. Your son has an illness, not a character flaw or a spiritual flaw. Working with him from where he is is the only way you'll find a place where you all can coexist peacefully.
posted by Sidhedevil at 10:09 AM on April 24, 2012 [23 favorites]

I am sorry this has happened to your family. Dealing with a child who has a mental health condition is hard, hard, hard. I don't know how else to put it.

I have lots of family experience with mental health disorders where you keep shaking and shaking the ole Magic Eight Ball, and the only answer that ever pops up is "reply hazy, ask again." There are, unfortunately, cases where you have comorbid disorders going on, or symptoms that won't ever fit a neat diagnostic pattern. You've got to remember, too, that those disorder names are just shorthand that practitioners use for insurance billing purposes, and that those categories and their associated criteria are revised on a regular basis.

And even if you did have a clearer, more helpful label to stick on his set of symptoms, this does not always (or even often) mean they are curable: only manageable to a greater or lesser extent. Medication can be very hit-or-miss--what works for one patient may not work for another--and so the whole process of trialing different meds can take a long time, even years, and yes, sometimes you can try something that makes things worse, or comes hand-in-hand with other side effect. And sometimes the best you'll ever get is some symptom control, rather than outright elimination.

So what can you do? One thing that helps is to read, read, read. I don't have specific book recommendations on psychosis, as neither of my children exhibited much in the way of psychotic symptoms. But on the ODD end of things, I've found Ross Greene's "The Explosive Child" to be helpful, although there may be other books out there that are more appropriate when parenting a teen. For a crash course on psychiatric medication and what it can and cannot do, check out Crazy Meds and their online message boards.

The forums on www.conductdisorders.com were really helpful to me when I was in the first years of really grappling head-on with two kids exhibiting a variety of mental/behavioral issues. It was helpful both in terms of moral support and in terms of convincing me that, at least with my daughter, we needed to enlist outside help to ensure that she got the best, most appropriate educational placement.

If individual counseling or traditional family therapy are not being hugely helpful right now, you may find it helpful to do some "parent counseling" work with a counselor to support YOU in dealing with all this, in addition to strategizing and getting help identifying resources.
posted by SomeTrickPony at 10:15 AM on April 24, 2012 [3 favorites]

From the OP:
* Cursing - we certainly do understand that teenagers curse. Our concern was that part of what he learned in the local school was to use that to express his concerns instead of speaking politely and respectfully to his parents and siblings.
* Smoking - we are mindful that many of those who are mentally ill smoke, and for a time we did have a DADT policy. Our concern is where he is getting the cigarettes. He is asking strangers and picking butts out of trashcans.
* Religious vs. secular counselors - we have tried both and gotten the same result, mostly.
posted by jessamyn (staff) at 10:53 AM on April 24, 2012

With all due respect the school's job is to educate your child, not teach him social niceties. I doubt the school system has classes in cursing. If your child rearing skills can't withstand a year or two of exposure to peers that is not on the teachers or the school district.

It's also not the school job to deal with mental illness but I bet there are some education professionals that can help you at that very school. It sounds like you desperately need a psychiatrist that both you and your son trust and can work with. Have you approached the school counseling staff for a referral? How about other parents? They will know more about local resources than anyone here.
posted by fshgrl at 11:27 AM on April 24, 2012

He is 16 years old. It is time for you to start listening to the things "HE" thinks he should be doing and not speak about it so dismissively. He needs parents in his life who will back him up when he listens to his heart even if you don't always agree with what he does. He needs to make some of his own mistakes, possibly big ones. If you don't do that now, you will lose him in 2 years anyway. I have both worked with kids who are like this and been that kid. It is not developmentally appropriate for him to be under strict control. In the psychoanalytic tradition, psychosis can be symptomatic of a family which does not see the patient's reality, causing a rift. I know that there are many ways of looking at psychosis, probably many different causes for the same symptom, and I do not mean to be accusatory as that may not apply at all - I just think it's a heavily considered idea that's worth examining. There is nothing specific about your son's psychosis in the question, but I have seen over and over again that "delusions have content": in other words, they do make a type of sense if someone takes the time to sit down and listen and appreciate the words in a metaphorical/symbolic sense. If counseling hasn't helped, it may be because he doesn't really feel listened to, or knows it is of limited use because even if the counselor agrees with him you won't allow something like school. Therapy can be very fraught for minors because the counselor's loyalties are naturally divided between parent and child. Therapy is usually more helpful when this is not the case.

I understand from your follow-up that you have other children. This can be very hard on families, parents, other kids. Of course you want to protect them from disrespect and abuse. What I said above shouldn't be taken to mean that he is exempt from really important standards. He should just have more choice in both small things (smoking might be one of these) and things that affect his life a lot (being homeschooled or going to school). Don't use his diagnosis to undermine his choices and his upcoming independence, as bumpy as it will be. When that happens the psychotic issues can acquire a permanence that they don't need to have - this really can be cureable and transient with the right support - and you can end up with a lifelong, angry dependent.

One practical thing I can recommend, if your therapist hasn't already, is symptom charting, something that both you and he can do. Having a record of what happens can help in any number of ways:
-you can see if maybe there was a precipitating event and what was going on there, possibly examining the dynamics and all involved
-you can keep track of moods and see if there are any patterns
-you can keep track of positive developments too
-you can follow up the symptoms by processing them later - he can see on paper what happened when he is more in his senses and so start to consider the effects of his actions on the family more (in psychosis he is probably too wrapped up to do so at all)

-it can help professionals when you consult with them.

I hope you find the help you need in dealing with this.
posted by decathexis at 11:31 AM on April 24, 2012 [6 favorites]

Religious vs. secular counselors - we have tried both and gotten the same result, mostly.

Again, with respect, I strongly feel that given your son's particular issues, you need to be seeing MD psychiatrists as much as possible (I know insurers don't support that on an extended basis, alas) and working with the counselors they recommend.
posted by Sidhedevil at 11:45 AM on April 24, 2012 [4 favorites]

From the OP:
And here's my last followup: You all have, for the most part, posted some very useful and insightful comments. Just a few more clarifications - he is seeing an MD Psychiatrist and has been for a year - in fact, he was seeing two of them until very recently - since his diagnosis. We DO want him to have a productive, fulfilling life, so for those who have a concern that we are not listening to him or are dismissing his feelings, we are listening to him and encouraging him to the best of our ability. In his current state, if left alone for more than 10 minutes, he gets into trouble. One of those times he could have died (no hyperbole - you'll just have to trust me on this one). We are not dealing with a reasonable individual, as sad as I am to have to say that. What we seek is a therapist to help him accept his condition (he denies there is anything he needs treatment for) without making him think that the only thing he needs in order to live a normal life is a green light from us to do anything he wants.

We do realize that schools don't treat mental illness and schools don't teach social niceties - suffice it to say that this particular school gave us some assurances about some issues which, looking back, were either ill-informed or disingenuous. We should have known, but didn't because we have never dealt with the school system before - we simply believed what they told us. That's not an indictment of all teachers or all schools - just this one.
posted by jessamyn (staff) at 1:12 PM on April 24, 2012

I have several family members with severe mental illness and I was involved in the care of two of them- my mother and my cousin- some years ago, so I have some understanding of what you're going through. Is there any history of mental illness in your families?

Is your son taking any medications? Do they help or make things worse- in his estimation and/or yours? Sometimes it takes months of trying different drugs and dosages to find something that works. I assume that when he was hospitalized they checked for any sign that his psychotic episodes were due to recreational or prescribed drug use or abuse.

It's very hard to grasp the idea that something is making our thinking weird. It's not something concrete- a broken leg that keeps us from running, or even a disease that has obvious symptoms that we can see with either naked eyes or microscopes. Does he like to read? Might he be interested in reading books like this or even something like this?

Does he have any interests that could lead to employment? Does he like working with his hands at all? Is he interested in finishing high school? If so, can he do it online? A lot of US states offer that option and it's free. Or is he ready to take college courses? I'd be happy to send you links appropriate for your location if you mefi-mail me.

Are you getting any support from family or counselors? NAMI looks promising. Meeting other parents who are dealing with similar issues could be very helpful. I hope you all find some help and relief soon.
posted by mareli at 2:20 PM on April 24, 2012

My family went through a very similar situation with my brother (then just a few weeks' past his 18th birthday), and I first want to say that I really understand how difficult and painful this is for your family. My heart goes out to you, but please don't give up hope. My brother is now nearly 24, hasn't had a psychotic episode for several years, and is tapering off his medication. Here are a few things that really helped my brother make progress.

* Find a doctor that your son trusts. If your son doesn't believe that the doctor is working for his interests, this will seriously undermine progress, whether or not your son's beliefs are based in reality. When my brother started seeing a new doctor who he felt listened to him and cared about him, this made a huge, huge difference.

* Therapy for the primary caregiver. Caring for a teenager with a mental illness is tremendously stressful, and getting support through that is really, really helpful. Your son will pick up on and amplify your stress in himself. You need to take care of yourself to be able to give your son the best possible care. Your son's mental illness is absolutely not your fault, but there are also certain interaction styles can tend to make psychosis worse, and therapy can help you communicate more productively with your son.

* Keep focusing on "cured" as the ultimate goal. I know many people say that many serious mental illnesses cannot be cured, but my mother refused to give up on believing that her son could live independently and off medication, and while it's been a very slow process, he has moved much further down that path than the doctors ever expected after his initial psychotic episode, and is still making slow and steady progress in that direction. I think being surrounded by people who believed he would have a "normal" life eventually really helped my brother not give up hope for his future.

Also a note on your comment that your son is "not reasonable". I know where you're coming from, and my family also has a couple of "could've done very serious harm to himself" stories to share, but it's also important to remember that your son is probably better described as "selectively reasonable" and is probably making some reasoned choices about his ability to achieve his ends working with you versus working against you. Whatever it is that he wants (and it sounds like autonomy is a big chunk of that) if your plan for him doesn't move him at all closer to his goals right now, why should he cooperate? There have to be rewards in it for him that he can grasp in his current mental state. Then, as he makes progress and can make longer-term risk/reward calculations, you'll hopefully find that his goals for himself get less risky and there's more room for him to safely pursue them.

Memail me if you want more info. There's a lot of detail I left out for privacy considerations.
posted by psycheslamp at 3:39 PM on April 24, 2012 [6 favorites]

Has he been tested for drug use? Bear in mind that stimulants pass from the system very quickly.

It sounds like a mess. I suggest really listening to what he says he wants to experience. School? Part-time work? Both? Listen to his truth.

The problem here is that the more we try to create a specific environment for children, the more likely it is that they rebel against it as they reach adolescence. It will be a task to figure out how much of his behavior is appropriate for his development and how much is due to illness.

I suggest family therapy. It can go a long way, and I think it could help him more than any other treatment available at this point in the progression of illness. You'd need everyone to at least be willing to be in the room, even if they don't participate in the treatment. You also might want to read about active listening - sometimes an agitated person calms down a lot, very quickly, when you use this skill. It's easy to learn.

You said the counselors talk about the things he thinks he should do. Unless it will threaten himself or others physically, he has a right to be setting those goals. The more he feels pushed to conform, the more he will act out. And take care here, because even if you THINK it's all passed and he's finally gotten on "the right track", lack of open support for his concerns could just push everything underground (problem behaviors increase but happen without your knowledge). I do not bring this up as a threat so much as another reason your family might consider letting him steer his own ship a bit.

I realize his stated goals and interests may be directly opposed to your own, but for the health of your whole family - this child included - I ask you to really consider being more open to hearing his concerns here. Otherwise I'm afraid it could only get worse.

Could you talk with him about a compromise? Say hey son, I know you have your heart set on X goal. We've said you can't but I want to try and see whether we can help you make that happen. If you go one week without (thing he could have killed himself doing) then we will (some kind of action that will support his goal).

[Side note: I don't know why I'm thinking you may be talking about self-mutilation here but cutting is a special behavior. It is not an expression of suicidality if it is not done on major arteries. So cutting on the underside of the wrist would be suicidal behavior but cutting the hand, stomach, toes, feet, etc. would be "cutting" and this isn't generally an expression of suicidal feelings. It is more like a way to access emotions or regulate emotions that some teens use instead of self-regulating the way others do.]

You said his goals won't work because he is impaired, but you didn't say what the goals were. People with serious mental illness can still have a life. They can build friendships and work and learn. It isn't a case of oh you have a diagnosis so you can't do anything other people do. Limitations typically only surface after a long time where the person learns what they can and can't do. Note I said they learn. Some folks end up in group homes and some folks live independently and get treatment to stay on track. They cannot learn for themselves that they are unable to achieve unless they try to achieve. Based on his environment with home schooling, I am worried that he is going to make strong efforts to achieve his own goals with or without family support. It will be much safer for him to be supported as he attempts to achieve those things.
posted by hungry hippo at 9:30 PM on April 24, 2012 [3 favorites]

> We do realize that... schools don't teach social niceties

Actually, they do. One of my kids is in special ed because of his autism (and related traits), and they spend a lot of time working on social niceties. If you're not going to keep on homeschooling you should look into getting a decent IEP (if you're in the USA) and make sure it includes a social skills element.
posted by The corpse in the library at 11:25 AM on April 25, 2012 [1 favorite]

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