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Getting Kinda Crowded

I started a blog post on Saturday. It was about how I feel like someone is standing on my chest, how sometimes the weight of the world descends upon me and I feel suffocated. All of that seemed very important until yesterday when, for the first time, Carter opened up about his psychotic world: the characters who populate it, his role, my role, and much more.

Gobsmacked is the best word I can think of to describe the way I feel. I had no idea about most of this. Brian and I have been operating under the assumption that Carter’s hallucinations made only the rarest of appearances. He is typically very reticent to talk about hallucinations and delusions, probably because we have a terrible habit of acting very worried when we know Carter is psychotic. I find it unbearably annoying when I think people are worrying and fussing over me and I think Carter feels the same way. From now on, we’ll have to try to do our worrying in private so he’ll keep talking to us.

I don’t think Carter meant to tell me any of this. I mean, he didn’t wake up yesterday morning and decide, “Hey, great day to let Mommy in on a few secrets!”

No, he was walking past the door to Abbie’s room, which was slightly ajar, and was visibly startled, even letting out a little scream. He saw me watching him and said, “That guy doesn’t usually scare me. He doesn’t do much most of the time, but he startled me just now.”

Somehow I kept my face neutral, but I was stunned. Except for overwhelming anxiety, Carter seems very stable right now. How the hell is he hallucinating if he’s not manic?!?*

That’s a question for his psychiatrist, who we’ll see tomorrow. Obviously this will mean a change in Carter’s anti-psychotic medication, but I’ll try, for now, not to think about that. I hate making med changes. In the meantime, I’m going to take you on the same tour on which Carter took me. It’s a strange world. Turns out, things are lots more crowded around here than I thought.

This is one of two guys who live in Abbie’s bedroom, the one who startled Carter. He’s not very scary and Carter even says he’s a little funny sometimes, so it’s fine with him if he stays where he is.

While he lives in Abbie’s room, Carter sees him in other places, too, but the interesting thing about that is how he gets around: he travels behind Carter’s eyes. Carter doesn’t know that he’s there until he comes out, right through his eyes. I grimaced or shuddered (probably both) when Carter told me this, but he assured me that no, it wasn’t unpleasant at all; there’s only a slight pulling sensation.

He doesn’t have a face which seems to work just fine because he doesn’t do anything. He likes to hang out. The guy he hangs out with (who also lives in Abbie’s room) is a character from Fraggle Rock and is Carter’s only hallucination that he didn’t build from whole cloth.

I have no idea what could possibly be scary about this little thing (Does anyone remember what these are called?), but this is a bad one.

This hallucination, like all of Carter’s hallucinations, has no name. Wait, back up: a very brief introduction to psychosis starts now. Psychosis is an altered perception of reality, the primary features of which are hallucinations and delusions.

Hallucinations are perceptions in any of the five senses that have no external cause. Most of Carter’s hallucinations happen in his senses of sight and touch, occasionally in his sense of hearing, never in his sense of taste, and very rarely in his sense of smell.

Delusions are false beliefs that remain firm in spite of evidence that the beliefs are untrue. The majority of Carter’s delusions involve super powers (super spit, electric hair), though he has more and more paranoid delusions as time goes by.

Back to the nameless hallucinations: most of them never speak to him, and all but one (I’ll get to him in a minute.) only say things to get his attention, like “Hey, kid!” or “Carter!”

As Carter was telling me about all these little guys, I kept asking, “What’s that one’s name?” or, “What are those called?”

Finally, Carter snapped at me, “They don’t tell me their names! How would I know their names if they don’t tell me?”

These are two of dozens of little guys who live on our stairs. Some of them are naked, some wear clothes. Some look nice, some are gross and ugly. The one above is furry all over and wears blue jeans, a red shirt, and carries a handgun. The one below wears nice pants with armor on the top and carries a bazooka. All the little guys on the stairs carry weapons, apparently unaware that we’re a Mennonite family and that shit won’t fly. Sometimes, the guys on the stairs are mean and try to hurt Carter, and sometimes they play games and amuse him.

These guys have been around for awhile and were the only ones I knew about until recently.

This next guy lives in one of the closets in my bedroom and is a scary, hateful beast. Carter told me, “That pink guy is the one I want to go away the most. I hate him!”

So, OK, a couple of things.

First? I was scared of the bogeyman when I was a kid, too. I was afraid to get out of bed during the night for fear that the monster that lived under said bed would bite my ankles. I knew there was no monster; I knew the whole notion was ridiculous, but I jumped out of bed nevertheless, trying to gain a little distance between my ankles and that damn dark space between the bed and the floor. I never saw this monster; it never said anything to me; I knew it didn’t exist.

For Carter, though, it’s all different. First is the obvious: he actually sees his bogeymen, and though they rarely speak to him, they will make sure they get his attention if necessary. Remember, if you will, what it’s like to be seven years old. Imagine for a moment that your bogeymen were visible. That right there is enough to make me weep for a month for my boy who lives in a terrifying world, where monsters might show up at any moment.

The second difference is that Carter isn’t quite sure if they’re real or not. If I ask him if these guys are real or pretend, he says they’re pretend, but sometimes he asks me why he can see them and I can’t. I answer him with some variation of, “They come from your own mind, Carter. Your brain and your eyes get a little confused and see things that aren’t real.”

Well. Either I said the world’s stupidest thing, or Carter is more psychotic than I thought because he insisted that, while all these guys are pretend, somebody else is pretending them. They come from the imagination of some kind of super-being (Not God; Carter assures me that God has nothing to do with any of this.) who Carter has never seen.

Toto, I don’t think we’re in Kansas anymore.

This guy is a disembodied skull who lives in our dining room. He’s way bigger than my head and floats to get where he wants to go. This one is more mobile than the others because, while he is most often found in the dining room, Carter sees him regularly in many places, including our upstairs hall bathroom, the park, friends’ houses, and the bathroom at school.

I asked Carter why these guys are here and what they want. He told me that they want to suck out his powers because, while many of them have weapons or powers of their own, none of them have electric hair, a supersonic boomerang, or the ability to shoot lava out of their fingers.

Carter calls this a darkness ball. There is one that lives under the futon in my bedroom, one that lives behind a chair in our living room, and several that live in our backyard, but they can show up anywhere. Carter hates the darkness balls and says the only one scarier is the pink guy who lives in my closet.

There’s just one last guy, the only one who talks to Carter and who is invisible. He’s the only one Carter likes and though he’s nameless, Carter says he’s a friend. This guy likes most of the same things that Carter likes except for chocolate and riding scooters. Mostly, they play Legos or Bakugan together. He’s also the one who Carter says has been around the longest; he says they’ve been friends since we lived in our old house. We moved 2 1/2 years ago.

That guy, the nice, invisible one, is the only one who will come out when I’m around. The others hang back or stay in their hidey-holes when I’m present. They don’t like Lolly (our biggest dog) or Brian much, either, but the move back furthest from me. That handily explains why it’s always such a crisis when I leave the house without Carter and why he follows me around the house like a lost puppy.

One of the things that worried us early on about Carter is the fact that he almost never engaged in imaginary play. When Jacob, Abbie, and Spencer were two, 4, 5 years old, they were very busy pretending to be 1,000 different things, but not Carter. When we tried to engage him in imaginary play, he was confused. He didn’t tell stories, didn’t pretend to be a superhero, didn’t fantasize about being an astronaut, ball player, or anything else. When he was 5, I asked him what he wanted to be when he grew up. His response was, “I’ll be a grown-up.”

I know good and well that psychosis is not about imagination, either over or under-active, that the two things (his lack of imagination and his psychosis) aren’t necessarily related, but I have to tell you, I’m in the dark here, and that’s new for me.

I have a head jammed full of knowledge about a ridiculous variety of subjects. This is mostly the result of the fact that reading has been, ever since I became truly literate near the end of second grade, my very favorite thing to do.

Of the many subjects about which I am knowledgeable, mental health is probably the topic about which I know the most. I wrote my very first research paper ever (seventh grade, I think) on autism. I was immediately done for – endlessly fascinated by the varieties of ways that the human brain can be different, dysfunctional, sensitive, or broken. I couldn’t get enough. I read about eating disorders, OCD, depression, bipolar (still called manic depression back when I started on this knowledge quest), addiction, the difference between Axis I and Axis II disorders, and so much more.

What topic did I neglect? Psychosis. Of course, I didn’t neglect it entirely, but I didn’t study it the way I did, for example, OCD or eating disorders. Most of my knowledge about psychosis came from I Never Promised You a Rose Garden and the occasional mention of it in a few books, most of which said something like, “Psychosis is a very serious condition characterized by a distorted perception of reality.”

How confusing and scary it must be to be Carter! I have much to learn, a great deal to grieve, and a huge amount to accept. Just when I feel I am nearing some sort of completion with this process, Carter reveals himself to be more ill than I’d imagined.

Of course, before I have a chance to deal with my own feelings, the first priority is to get Carter out of a psychotic state. Not only must that be terrifying for him, but psychosis actually causes brain damage (again, something about which I need to read), so the less time he spends there, the better. Fortunately, Carter’s psychiatrist is as concerned as we are and working hard with us to get him back to reality. I often feel like all we do is shuffle symptoms; we resolve (or significantly improve) one and another takes center stage, but we won’t give up. Not ever.

Now, I need to tell you this: I don’t want your pity, or even your sympathy, although your prayers and positive thoughts are welcomed. What I really want you to do is take some action on behalf of kids like Carter. It doesn’t have to be big; challenge an ignorant comment about mental illness next time you hear one or tweet the links to good mental health articles when you read them. If you know someone whose family is struggling with a mentally ill loved one, offer them some practical support. If you have more time and energy? Lobby for more, better services for people who live with mental illness.

Remember, if you love someone who is living with mental illness, I would love to publish your story here at No Points for Style. Read this page for details.

*I actually know the answer to this question: extreme anxiety can induce psychosis just as severe depression, mania, and some other things can. I’m just surprised, except that surprised doesn’t begin to cover it.

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60 comments to Getting Kinda Crowded

  • I can offer you prayers and let you know that you are not alone. Also, I’m glad that Carter is opening up more about his hallucinations.

  • Carter, and your entire family, will be in my thoughts as you work to help him find his way back to reality.

    If you need a shoulder, a laugh, or an opportunity to rant, I’m here.

  • The thing that hurts my heart more than any other about my kids, is not that they will be disappointed, heartbroken, lonely, frustrated or hurt in their lives. It’s imagining that they will be *scared.* I hate imagining that. And I’m only imagining. And I’m sending love as a way to give your heart a little more strength if it needs it to talk through things like this with him.

    How amazing that he can tell you these things. How truly amazing.

    I’ve worked with older adults my whole career, psychoses are not uncommon once a certain amount of medical diagnoses (and medications) are stacked on top of one another. And I often ache for them too, that they are *scared* of things that are not there, and I can’t help them not be. It makes me want a big eraser to take to whatever it is they see (or hear) and get rid of it so they can feel peace, and rest.

    If only…

    • Yes, it’s what makes me the most sad about my grammy, too. She’s not psychotic, but confused, which makes her afraid. I hate it. I hate that Carter is scared, that I can’t fix it, that I have limits (since I am his only safety, he wants me next to him 100% of the time), that we don’t know what will happen next, that being in a psychotic state is damaging, that the drugs have side effects, that the media is so hard on us.

      Sigh. There’s a lot to be angry/upset/scared about. It’s why I cultivate denial like it’s a bonsai tree.

  • I am so glad that Carter opened up to you about his hallucinations because that gives you such good information to take back to his Psychiatrist. Hopefully these are things that can be used in Carter’s therapy to help him get better. I am, of course, praying for you guys. Stay strong (I know, easier said than done).

    • Thank you! Yes, I’m very glad he opened up, too. We’ll be taking all these pictures that he drew to the psychiatrist so he can tell his story to her, then take them again to his psychologist. We can’t treat what we don’t even know about!

  • Wow that must have been very intense… did you get him to draw the figures while you were talking about them? I’ve worked in the mental health field (with adults with psychosis) and also had group therapy with young men who had had (or were having their ) first psychosis. I just wanted to mention that well-established anti-psychotics don’t necessarily mean all the hallucinations go away: they can “just” be more mellow. Some of the guys I talked to preferred it, because when everything went completely silent (or “normal” for us) it made them feel very strange and unhappy. I just wanted you to know, if everything is going well (also in the future) and he mentions a hallucination, it doesn’t necessarily mean he’s getting worse. Of course, doctor’s the one who will look into it.

    • He drew the darkness ball first, without any urging from me, and then I only had to suggest that he draw the rest and he was drawing as fast as he could.

      You know, I have heard so many different things about psychosis, but know so little. Some have told me that psychosis causes brain damage every day that it goes on; others have a more measured approach. I’m always grateful that I trust his doctor, though I do wish she’d explain more to me. There’s very little out there about psychosis in kids!

      • The drawings really are amazing.

        I can’t even imagine what it’s like to have a kid with psychosis: everything is aimed at adults, and I think it used to at least be the case that diagnostics didn’t even allow for psychosis diagnosis until 18! And the drugs.. of course they are all tested on adults, so it’s so difficult to figure out dosage & plans and everything for growing children.

        I think one of the main problems is that professionals ALSO don’t know how exactly psychosis works, nor how the drugs work to treat it. Unfortunately, people in the medical field will often state something as certain, instead of mentioning that it is the theory for now.

        You are doing an awesome job at figuring this out, talking to your kid, getting to know how HE works, how HIS problems and hallucinations work. There’s no one cure-all, unfortunately. But you and the people close to him will be the most experts on his condition. I have also heard that psychosis causes brain damage, but as far as I know it happens when there’s a real breakdown – I imagine it to be due to the overload of stimuli, synapses firing in the brain. But on the other hand, it’s so hard to tell as the knowledge changes so quickly, as do the drugs. Isn’t the brain damage that has been researched down to late intervention, or too many drugs, or the wrong drugs? The human brain is still a mystery, unfortunately.

        I just think you’re doing an awesome job and carter is very lucky to have you. Trust your instincts.

        • Yup, you hit one of the main problems right on the head: serious, massive lack of research in the areas of drugs AND kids’ mental health. There’s nowhere hear enough. I have a lot of reading to do, but I need to get over to the university library to read the best stuff. As soon as Brian gets home from Japan, I’m spending a day over there!

  • Meg

    Adrienne, it’s so helpful (although I’m sure very overwhelming to you) that he shared with you what is going on. I am struck by how involved, complex and long standing his hallucinations are. His description of his world is like hearing Jani Schofield talk about her psychotic world or her little friend that she was in the hospital with that has paranoid schizophrenia (in the Oprah episode). They both have very involved, long standing hallucinations that are completely a part of their every day world. I hope your doctor can shed some light on what is going on. And I agree with the previous poster that you might have to prepare yourself for the fact that although meds can help, sometimes when the psychosis is very involved the meds don’t or can’t completely contain it.
    I’ll be praying for you and your family.
    Hugs, Meg

  • I can only imagine that you were both shocked and relieved when he opened up about his hallucinations. I hope that maybe, in some way, it was therapeutic for him to open up like that.

    Prayers for you all!!

  • Thank you for sharing this. It must be such a relief for Carter to be able to show you what he is seeing and for you to be able to share it.

    I am thinking of your family. Lots of hugs and good thoughts to you all.

  • thenextmartha

    I am so happy that you are now able to have a better understanding into his way of viewing the world. I can’t imagine the anxiety he must have every time he wants to use the stairs. Prayers and hugs to you and your family.

  • Please don’t take this the wrong way… But this all fascinates me.

    I feel horrible for Carter, and your family – but I am completely fascinated by your/his story. What a brave child you have. Not that he has a choice – this was all kind of thrust upon him. But to cope and live at all is an awesome thing.

    Thoughts and prayers go out to you and your family! Carter is an amazing child.

    Because of the information you share here, I am compelled to learn more. Thank you for that! And thank you for sharing.

    • Oh, no, I don’t take it the wrong way. Remember, I was fascinated by mental illness long before Carter came along. I always hoped I’d be able to use my knowledge to help someone in some way. I’m glad you’re going to learn more! Soon, I’ll put up my blog list and some resources, so that’ll give you lots of things to read.

  • Wow! I wish I had more to say but that’s all I can muster. I admire your strength and Carter’s courage. I will keep your family in my thoughts. I really wish there was more I could do!

  • very interesting to me but also scary. i know i would have trouble keeping a straight face if Taz told me that. and it would scare the crap out of me. geez. why does this have to happen to little kids? it just baffles me. i really hope your psychiatrist can find something to help carter. it seems like he’s dealing with it pretty well. probably better than most adults. but i suppose if he’s been living with it so long it’s become so normal to him. but still, he shouldn’t have to live with it. no person, especially child, should have to live in fear every day. especially of something that’s not even there! poor guy. well, keep us informed and i hope the next post is about how much better he’s doing!

    • Absolutely. It’s so wrong, but of course it’s also wrong that kids have to live with cancer, or AIDS, or diabetes, or any of a thousand other diseases. Here’s what’s so amazing to me, though: I thought when a person became psychotic, he or she became mostly non-functional. I had no idea that a psychotic person could appear normal a large percentage of the time!

      I have so much to learn.

  • paige

    Wheee-ew.

    My oldest kid, who’s 18 now, suffered from psychosis due to prolonged, severe, undiagnosed depression. I’ve had psychotic symptoms from extreme anxiety and severe depression. Both my brothers suffered psychotic symptoms from severe depression.

    My brothers and I were adults. My son’s symptoms became severe at 14 and we had a two year journey to get him diagnosed and sorted out and appropriately medicated. He’s on a drug combo that works well for him (and is wicked expensive but worth every effing penny), is holding down a full time job, progressing through therapy and we’re still not sure if he has had double depression or if he’s mildly bipolar.

    When we found out he was hallucinating and having delusions, that was sooo scary. It galvanized me and my husband but it made us terrified and sad, too. Talking to a kid who’s been suffering through horrible hallucinations without any help was just heartbreaking.

    I hope his med changes help and help quickly. I know that horrible, sinking feeling, like you’ve stepped off a stair into thin air…I’m so sorry that you guys have that feeling and so sorry that Carter is going through this.

    • Oh, my gosh! Yes, stepping out into thin air – that’s exactly how it feels! Thank you for putting words to it. Ever since he described all this to me, I’ve felt a little off-balance, kind of disoriented. It’s a terrible feeling.

      I’m so glad to hear that your son is doing well. My only hope for Carter is that he has a satisfying life, whatever that means – college or not, independent living, our house, or a group home, whatever, just so he feels useful and happy. It sounds like your son is on his way there.

  • What an incredible peek into Carter’s world. Thank you for sharing. I first read your story a few weeks ago when you guest posted. It was entitled “The only thing that’s different is everything.” I’ll never forget that post. I read it several times & then read it aloud to my husband. What impacted me the most was the incredible strength you have as a mother, the bond you hold fast to with your husband, and your endurance to do whatever it takes for Carter. I was & am in awe. Keep telling his & your story. I will be sure to do my part to raise awareness any chance I get.

  • I really hope you find something that works for Carter and that he is able to live peacefully. My heart just aches for him and for you as a mother to have to bear witness to the torment of your baby. I’ve worked with adults with various forms of psychosis, and I know how baffling and heart-breaking it felt to me, to see the psychosis prevailing in someone I cared about- in a professional setting. But I’ve never experienced it as a mother, as you have. Thank you for sharing your son and his story with us. I hope you get some answers and gain some peace.

  • I hope that this insight helps you and his therapist work towards helping Carter. How scary for him. I’m glad that these beings are afraid of you, and that he at least has 1 who is his friend so he isn’t scared all the time.

    You are a strong ass lady!

  • I read this story and sat relating to your story. My daughter is bipolar and at time has hallucinations. It is difficult for so many others to understand. Many other mothers look at me and think what a terrible mother I am. My daughters behavior is not always in her control. From day to day I find that I struggle to understand all that my daughter is going through. I start to feel bad for all that I have to deal with and then I think of how she is dealing with it. She has been like this all of her life. She is 9 now and certainly old enough to know that she is different. She knows that the other kids do not want to play with her. She knows that people look differently at her. As a mother it is a struggle to understand how they feel. It is so wonderful that he has opened up some. I know that when my daughter opens up she feel better about it because we can discuss it and she can help me understand and I can help her to understand. It sounds to ma as if you are doing a wonderful job. Continue to listen without judging and he will continue to open up. I always tell people, especially in school, that my daughter is going to be a goal driven, successful adult and that it is my job to get her there. It is exhausting but I feel it is worth it.

    On a side note. I love your blog and have book marked it. I have a started a blog in order to share, vent and educate on bipolar. http://www.Bipolarkidconnection.com is a work in progress but it is nice to have a place to go where others understand. It is also nice to have a place to talk about me and all that our family goes through. The good times, the bad times and the times when I just need to write. Thank you for doing what you do. I certainly will be back.

    Becca

    • Thank you, Becca! I’m glad you came by to read and comment.

      Carter, too, has been different from birth and my husband and I have been the unlucky recipients of a great deal of judgment. Thank goodness for the internet; it has helped me find people who understand that we’re a very ordinary family, no better or worse than any other! I’ll head on over to your site to take a peek.

  • Maura

    Perhaps you were meant to write a book about this to help other parents and caregivers…

  • You and Carter are definitely on my prayer list. I used to work with mentally ill middle school kids and it was tough but you are so right – these kids need all the advocates they can get. God bless you

  • I don’t even know how to respond to this one. Poor baby. Honestly, I got chills while I was reading this and it made me think, I don’t know, ummm, I’m weaker than you and it would scare the shit out of me? I don’t know if I could deal. You are incredible. Seriously incredible.

    *HUGS* (for you and Carter) I’m thinking about you. I’m not just saying that either. You really are on my mind. And in my prayers. Love you.

    • Thanks Roxane! And I promise, you WOULD deal. You just would. There’s nothing special about me. I love my kid so I find a way. Some days I do great; some days I do lousy. Most days I do good enough.

      And yeah, it scares the shit out of me. He drew that darkness ball and I got a terrible chill all over just imagining the world he’s living in. I wanted to put my head down and weep.

  • I can’t pretend to know what you or Carter are going through but I did want to say I think Carter is a very blessed boy to have you as his Mom. I will keep you both in my thoughts and if I come across anything I think may be helpful I will definitely let you know. (I don’t work directly in Mental Health but in a indirectly related field).

  • Shoshana

    I just found your blog through another one and read a huge amount of your older posts including the horrific one about being bullied.

    In some ways, your son’s hallucinations sound as though he’s being bullied by figments of his own imagination.

    Whatever support or acknowledgment you wanted and needed and didn’t get when you were bullied may be some small help to your son.

    • Thank you! Yes, I guess in a sense that’s true; they ARE like bullies, little beasties who won’t go away and leave him alone. I think all the pain I’ve experienced in my life – the bullying, the pain of my family life, and everything else – serves to make me sensitive to all that ails Carter. I’m grateful for that piece.

  • […] And this? This is, relatively speaking, pretty good. Or not good, but a long way from what we know as bad. He’s not suicidal; he’s functioning well at school. He has only the mildest of psychotic symptoms. […]

  • Patricia Wood - Patty

    Ok, I hope this doesn’t sound ignorant, but even if it does, I still am gonna say it. A couple years ago I had major surgery that went wrong and eneded up in a comma for a couple weeks. The first couple days in ICU, after being brought out of the comma, I thought the hospital was under attack, that I offended a patient up the hall and he died and so all of the nurses hated me and that the air conditioner was about to fall through the ceiling any second. I tricked a nurse into allowing me to use a phone to call my mom in the middle of the night by telling her my mom was due to leave the house to come to the hospital and I didn’t feel like having company. Then I told my mom to hurry up and get down there because the ceiling was just about to fall. I don’t know what was in the medication that kept me in a comma but it took days for it to wear off. Any chance carter’s could be drug related?

  • I hope this might be of a small comfort to you, but as someone with bipolar disorder and borderline personality disorder, I live in a similar world. Frequently startled by people who I now know are not there. If you can get him to talk to you about the things he sees, eventually he’ll come to a sort of understanding with himself – Where we know these people are not real, but they’re real to us. I mean, some of these voices and people have been around for as long as I can remember; I’m aware of the fact that they are not part of the real world, and thus cannot physically harm me, so for the most part, I’ve grown accustomed to them, and I’m sure I would be quite lonely by now without them.

    The advantage your son has is that you KNOW what is going on, and try to understand it. My parents didn’t understand it, and my mother was very against psychiatrists, despite the suicide attempts that started when I was 9 (I was also apparently a very unhappy child). These things never 100% get better, but with support and understanding, he can voice them out and make them background noise. This is what my husband has allowed me to do; I spent 3 days of our honeymoon wanting to curl up and die, until he made me talk out what I was seeing and hearing, and he discussed them like they where real people (since they are real to me), and honestly, despite the hours of screaming and crying, I felt much better afterwards.

    The fact that you allow him to talk it out, not make it taboo or scary, will allow him to process these things even better as he gets older – he’ll eventually become self aware, and know the difference between this reality and the one everyone else lives in. I’m torn on writing this, but I know how difficult I was for my family, it took 20 long years to gain a semblance of normalcy, and being pregnant now I live in fear that my daughter will suffer in the same way. The only reassurance, and one I hope I can convey to you in some small way, is that with positivity and support (and medication), a normal life can be led.

  • […] but taxpayers will insist that someone pay for a prison cell if he hurts someone in the throes of a psychotic episode someday. Republicans don’t want to fund the expensive special education programs that kids […]

  • In my own little world of solitude, depression, and a fake smile I find so much comfort in your blog! I’m still not sure how I came across it in the first place but I cannot stop reading! You have put into words and documented the exact journey I have been on for the past 8 years with my beautiful, red headed, mother killer! From the sleepless nights, clingy days, lack of smiles, and months void of belly laughter. We have moved onto the complete manic state of processing disorders, rooms full of non-existent beings, diagnoses after diagnoses, med change after med change, and days of worry and an overwhelming sense of running away as fast as I can! My daughter still does not take part in imaginary play which makes me cringe when her 2 year old sister eagerly sets up a tea party and my 8 year old looks lost as too why we need baby dolls and animals to attend. I too have been on this road with you, separated by the world but on the same journey! Some people say children like ours are “Easy to Love, Hard to Raise!” I beg to differ, I too wanted my child so bad, I prayed and prayed, lived through cancer, several surgeries, and miscarriages just to be told that I would never conceive. When I found out I was pregnant, I felt an overwhelming sense of peace, an eternal blessing that I could mold into this beautiful person that would complete my life! She has brought out actions and thoughts from me that I thought only capable of the most horrific mothers. She has brought out tears of sorrow, pain, frustration and despair. She has molded this outgoing bubbly person into a depressed hermit that hates to leave the house. My child is wanted, but not easy to love, she is hard to raise, and everyday I have to make a conscious effort to love her with all I have. I don’t think I’ve ever outwardly admitted that but thank you for supplying a “safe place” for me to just say it!

    • Gail Finke

      I just found this blog today. My son does not have nearly as many problems as Carter or others here. Is it bad to say I find him “hard to love AND hard to raise”? I love him, but I just can’t let myself feel it a lot of the time, or it makes me too sad to function. So I get by knowing I love him and functioning out of that.

      • You know, you’re right. The wasn’t completely honest of me, and it’s a good reminder of how easy it is to lose track of just how hard life can be when it all goes to hell. Sometimes it is hard to love him. At those times, I play pretend (or ask someone else to take over, which thank God, I can do now) until the feelings come again. That’s a really, really hard way to parent because you don’t have the warm, good feelings to keep you going but we are limited humans.

        So thank you for reminding me that gut-level honesty is not necessarily pretty, but we don’t connect when we’re being (however unintentionally) dishonest.

        I’m sorry things are hard for you now. 🙁 Join us at this FB group if you like. In fact, anyone reading this who is the parent or primary caregiver of a child with special needs may send a join request.

  • I just came across your blog today! I am not a writer! I’m not good at it and actually dislike writing! BUT I love to help people so I felt compelled to leave a comment. I believe some of your son’s symptoms can still be improved. I have out of necessity for myself and my family been doing a lot of research this last year and a half. Have you ever researched hypothyroidism? There are potentially over a hundred symptoms! In 1888 in a Great Britain mental hospital they treated patients who had physical symptoms of hypothyroidism with dissicated thyroid. It is a bioidentical hormone made from porcine thyroid. The people who were treated with it got rid of their depression and psychosis’s! Also your son’s poor muscle tone is another symptom of hypothyroidism. The overproduction of mucin caused by hypothyroidism, can infiltrate the muscles and connective tissues. The mucin acts like a sponge and holds on to water. I know it may sound crazy! But since you love to read I’ll share some info here for you! What have you got to lose? Start with this video. http://m.youtube.com/watch?v=xMa-OiWkZ6M Here are a few must reads:
    Hypothyroidism The Unsuspected Illness by Dr.Broda Barnes.
    Hypothyroidism Type 2 The Epidemic by Dr. Mark Starr
    and Stop The Thyroid madness by Janie Thorpe
    It is kind of hard to find a Dr. that will use dessicated thyroid but they are out there! The medication is NOT expensive!
    You can also watch this video. I actually saw the whole video a year ago on youtube, but had to be removed because of copywrite. He is trying to sell his books and video, but you can ignore that and just gleen what you can. I hope that this info is an aswer in some small way to your prayers! And it not you then maybe another mother who may read it. You are a wonderful mother! Keep it up!

  • I just so happened to stumble across your blog because I was googling nose piercings and your daughters pic came on google images for her nose piecing that you posted. I’m not sure if you’re still blogging or not? This post has me hurting that your son is or was (?) going through this. Is he still? I know this post is a few years old. I’m a Christian and I’m not here to preach at you but I 100% believe that demons are pestering your son. The fact that he’s so interested in The Lord, that the one comes “out” of him, etc. all make me fully believe that he is seeing demons. I would love to talk more with you about this, if it’s still going on…
    Also, I know I probably sound like a crazy lady but I assure you I’m not and truly just want to help you and your family!

  • […] an apple and ask for help to use a bigger knife. He is not reacting dangerously and inexplicably to monsters only he can see. The child-safety locks on my car are disengaged because Carter doesn’t want to die and it’s […]

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