Schizophrenic Delusions

Well, the psychiatrist visit didn’t go quite according to plan. I thought we were just going in to get something to help Javan sleep, but after presenting the doctor with my notes on Javan’s behaviors per usual, he had a different reaction than we expected. Normally, I give him the notes of what’s been going on since we’ve last seen him and his reaction is that it’s nothing too severe and I leave feeling comforted. This time, he read the notes and then just held his face for a while before gently saying, “Look. I know this isn’t what you want to hear. But we really need to get him back on an anti-psychotic. His schizophrenia is obviously progressing.”

His main cause of concern is Javan’sleep current delusion that if a baby touches anyone between the ages of seven and twenty, that person will die from baby germs. I’m pretty sure this evolved from confusion over some of our recent discussions of “big boy hormones,” since puberty is unfortunately a thing that exists. (Why, Nature, whyyyy?) His body is changing and his hormones are changing, so maybe he’s incorrectly inferred that big boy hormones replace baby germs and that those experiencing puberty are somehow fatally effected by baby germs until they reach adulthood and become immune. Of course, this is all just an educated guess about his thinking process on my part, but even if I’m wrong it’s obvious that his thoughts are highly disordered.

This delusion has made it especially difficult to attend homeschool park day, as of course there are several babies that attend. I’m still trying to push park day as I know when we stop attending it makes it that much harder to get back into that routine later on, but we don’t stay long and I have to be hyper-vigilant about keeping an eye on Javan while we’re there. This week, I had to approach a stranger who isn’t part of the homeschool group and explain to her why we needed to keep her adorable toddler, who was obsessed with Javan’s low-to-the-ground three wheel bike, and my son apart. I explained that he has schizophrenia and all about the baby germ delusion. That’s a forward and awkward amount of information to confide in a stranger, but I felt that it was a safety necessity. Luckily, she responded with understanding and kindness, telling me that her mom works with developmentally disabled adults. She didn’t seem disturbed or accuse me of having my son in public when I shouldn’t or any of the myriad of other negative responses I have to mentally prepare myself for before such encounters. While returning to “the mom table,” I noticed Javan riding off from said table while the moms giggled helplessly. My sweet friend, Janis, who never misses an opportunity to joyfully greet my son, knowing full well that his responses are unpredictable and loving him enough not to care, received this response to her greeting that day, “I’m sorry, but I can’t hear you over all of my not listening to you.” That’s the joy of having friends who know your situation. They laugh it off and keep trying.

Other presenting signs of disordered thinking, which is what Dr. Fulsom kept pointing to as the indicater that Javan’s schizophrenia is progressing, include having trouble completing thoughts or taking an unusually long time to complete thoughts, OCD characteristics like refusing to count backwards or alphabetize words because the numbers or letters will get stuck in his head forever (and beating his head when they do get stuck in there), stating that “when his brain tries to confuse him with words, he gets a red flash of pain in his brain and feet,” and weaving a startlingly detailed story in Dr. Fulsom’s office about how he goes out at night and collects the world’s supply of Idiot Repellant, which he pretended to spray the doctor with repeatedly throughout our visit.

We agreed to try the anti-psychotic Seroquel, which can help order his thinking, reduce or eliminate delusions, and help him sleep. This allowed us to decrease his Tinex, which was given for tics and behavioral issues, which should help with his chronic constipation. The most unfortunate side effect ofor Seroquel: it causes weight gain. We just got him to a healthy BMI after taking him off his medications last year and now this. I’ve explained to him that weight gain is a side effect of his new medication and, at least in theory, he agrees that eating healthier and getting more exercise is in order. Since starting the Seroquel three nights ago, he is sleeping through the night without interruption for 10-12 hours. YES! Can I get an AMEN!

We did get two full school days accomplished last week, in which Javan became unwaveringly convinced that Thomas Jefferson is a fictional character and that Vincent Van Gogh was sending us a message through his famous painting, The Starry Night. 

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“Wait! Those don’t look like stars. I think they may be time-space portals!” According to Javan, when such portals align in a particular way, such as in the painting, they can form a powerline, which can lead to the destruction of most of the Earth’s human and animal population. When the powerline reaches the moon, the moon will rotate 180° and cause a central portal to appear. The central portal is forming in the middle of the painting. Contrary to popular belief, that’s not wind. It’s the end of the world as we know it. Attempting to lead him away from this line of thinking, I asked him if there was anything in the non-sky portion of the painting that interested him. “The tree in the front. It’s in the middle of the powerlines.” From this, Javan inferred that Van Gogh was leaving us not just a warning, but a clue to a potential solution. Maybe an antidote for the powerline can be found in tree bark! Impromptu nature walk, here we come! We collected tree bark and flowers on our walk to aid in Javan’s scientific investigation of powerline antidotes.

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You may be wondering if this is a delusion or merely childhood creativity. I’m not sure. I’m thinking just creativity, because although later that day he went on another walk and collected twenty or so more baggies of sticks and twigs as test samples, those samples are still sitting untouched on my kitchen counter. Sadly, that’s probably not the strangest thing you’d find on my counter. The point is, he didn’t perseverate on actually making an antidote, so logic would point to him not actually believing an antidote is needed. One thing I do know for sure is that he’s made real connections to Van Gogh’s painting and is learning to identify details in art that give that piece of art meaning to him.

The weekend, we’ve been completely couch potatoes, taking care of a sick Daddy and trying to decide if Javan and Mommy should get sick too. We’re still of the fence. Either way, we’re ready to tackle another week!

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Happy Father’s Day, Daddy

I don’t know if it’s a side effect of the current medication we’re trying or if my son is developing a psychotic disorder, but Javan has been experiencing an onslaught of hallucinations lately. Not all day, every day. But usually at least once a day at some point. Some scary, some benign, some annoying, some ridiculing. And to be honest, I have absolutely no idea how I am supposed to handle that. I comfort and reassure him as I can, but aside from that I don’t know how to treat the hallucinations.

But it touched me to the depths of my heart one day to see his Daddy know exactly what he needed when I hadn’t a clue. Javan had been hiding in fear under a blanket for about 15 minutes before Daddy came home. I attempted to comfort him, but he repeatedly hushed me and insisted that I shouldn’t talk to him or acknowledge him in any way so that “they” wouldn’t know he was there. I was scared and felt helpless and a little rejected. But as soon as Daddy got home and I told him what was going on, this happened…

DaddyJapheth just climbed right under that blanket without hesitation. He knew what to do. He knew what his little boy needed. He broke down Javan’s defenses in order to let Javan feel his strong arms wrap around him and look him in the eyes and reassure him that he was safe. I don’t know all that passed between those two in that moment, but I recognized the beauty of it immediately and snapped this photo. You can see our mess. That’s just life. But what what you see under the blanket is Life. It’s the real thing. And I thank God for this husband, this father, who lives Life with gentleness and grace and strength. I don’t know what I’d do without him. I love you, Japheth.

Anthills

This life can be so hard to process, can’t it? It’s moving faster than I am and I don’t have time to catch my breath, let alone ponder the past or the future. It’s all about the present.  I find myself wanting to share tonight not because I’ve finally found the time to catch my breath, but because today made me gasp, and that’s a sort of breath in its own right.

We were on our way into the bank. Javan had had a very good morning AND a nap, so we had a better than average chance of success. But on the way in, Javan stepped in an anthill in the sidewalk. He is deathly afraid of ants. His scream was so intense that it sent that instinctive emergency-grade motherly protection through me instantly. I saw that the anthill was empty: no ants. He couldn’t process that. It didn’t make it okay. I got him calmed down and we went inside. He was clinging to me in a tight hug as we waited in line for the teller to advance us to her station. Then he was hiding from her behind the “please wait here” sign. And then she called me forward. He rushed at her. This is what he looked like:

Image from disney.wikia.com

Thumper the Grasshopper.   Image from disney.wikia.com

I knew with a clarity I normally don’t possess in the middle of…that…what was going on. That’s Thumper the Grasshopper! From the movie “A Bug’s Life!” Do you know who Thumper is terrifying in that picture? An ANT. The teller represented an ant to him: a threat. He had determined this to be a dangerous place and so she must be a dangerous person. He was protecting me. By the way, the sound Thumper makes is this snarling, growling sound. Very intimidating. Not really your typical bank noise. So, I manage to coax him into a seat, explaining that she was safe and we were in a safe place. He didn’t buy it. I gave him a sucker. That worked somewhat better.

What I didn’t do, that I normally would have, was scold him. I told him we can’t make faces or sounds like that to other people, but he wasn’t in trouble. Because I saw this situation through his eyes. I knew that he was responding to a perceived threat. I saw the anthill and the ants that weren’t there. And I wondered, how many times do I miss the anthill? How many times do I yell and berate and, you know, other things I shouldn’t do, or even justifiable punishments like time outs…because I don’t see the anthill that’s so huge and obvious and threatening to him? I only see his actions as actions, as choices, rather than what they may really be: reactions. Reactions to things that may not even be real to me. And how must it feel to him when I punish him for reacting to the ants? Maybe even reacting to save me from them? No wonder he gets so angry with me. No wonder he sometimes refuses to trust me. To him, my behavior and reactions in those situations must make no sense whatsoever. To him, it must feel so unfair when I punish him. He doesn’t know I can’t see the ants.

It’s so easy to see his hitting, growling, rudeness, and just punish. And I’m not saying I won’t or shouldn’t punish. I’m not actually sure “should” will ever exist for me or my family again. I’m just saying I wish I could see better. I wish I could see the anthills and the ants that he sees. The threats and the things of this world that he perceives so differently. I wish I could understand.

But Javan’s version of reality will always be different from mine, and as much as I strive to see what he sees and understand his version of the truth and what is real, and as many tiny glimpses as I get into  his world, I’ll never really get it. The truth is, his version of reality seems to be getting farther and farther from the norm. More and more of the things he does are so completely out of the norm that comprehension totally fails me. Some of them are dangerous, some are hurtful, some are just different. More and more of the thoughts he thinks seem so bizarre and I don’t know where those thoughts could possibly be coming from.

Things seem more dire right now because his medication just isn’t working to keep these – delusions? – at bay. We’re in week two of a six week medicine change, weaning off one med and slowly introducing another. The medicine change could possibly help. It could also possibly make things worse. Whatever is happening, his psychiatrist does not feel that it is autism related. It is most likely the bipolar mood disorder. We go to a new specialist in two days to do three and a half hours of psychological testing to determine Javan’s level of reality testing. That means, can he tell what is real and what is not and how often can he tell those things? Maybe this will at least give me some clue as to how many anthills there are, even if I can’t see them.

Three Months of Random Ramblings

November

I found these garbled notes I had written way back in November, and didn’t want to throw them out…so here they are. I think I’ll follow it with mangled lists of things that have happened since…

A few brief examples of the high and low extremes our lives contain day to day, that might provide you with some insight as to why I’ve seemed muddled and confused as of late. I can’t seem to form coherent thoughts from my life, so here are some incoherent ones.

– My son creates his own reality, whereby he accuses a random teenage boy of stealing and sets out to beat him up.

-My family receives a compliment that our son seems like a perfectly normal kid and we work together well as parents.

-My son inserts the water hose into the living room, wedging its nozzle just inside the glass door so as to go unnoticed. I see and remove it just seconds before he turns the water on. He was trying to clean the house. He feels he would have deserved bonus points if the house had filled up with water.

– I feel that my son is getting behind in reading and math, to the degree that I don’t know whether to just do the first half of first grade again after Christmas or move on.

-On the other hand, it’s November, and he just finished first grade science and is eager to begin second grade science next week.

– I am hit with a heavy object flung across the room at me for the umpteenth time this week. The trigger: I was on the phone.

– My son bakes cookies in his play kitchen. So sweet. Until I realize that one of them is poisoned and is destined for the bad guy from Wild Kratts.

– We have Thanksgiving at our house and he does so surprisingly WONDERFUL! Even shared his playroom nicely (except for that once) with other children!

– I have no idea why the tv or xbox won’t turn on. Last week he disconnected the cable from the other room so all we got was static. This week, the power buttons don’t work. Hurry home, Honey.

– Javan finally learns to swing HIMSELF! It is so amazing watching all the bits and pieces of body movement come together in some form of coordination. I tear up.

December-January

-I get fed up with homeschooling through the computer and begin Christmas break early. Two weeks early.

– The Sandy Hook shootings happen and I hate myself for thinking of my son more like the shooter than the children hiding in their lockers.

-The world does not end.

-Christmas break is spectacular! He seems happier and more focused and, well, less annoying.

-My brother, sis-in-law, and their 5 month old baby girl, Addison, visit and Javan is a sweetheart. Relief. He loves his baby cousin so much that he will even share his Grammy with her. That’s saying a lot.

– My husband’s brother and his wife and four children visit, and Javan is still a sweetheart. He does so well with his cousins it always knocks the breath out of me. How can he be so sweet and loving and happy and communicative and present with them and not with other kids?

-On Christmas Day, he is so excited about giving us the gifts he wrapped for us that he absolutely refuses to touch his own gifts before giving us our own.

– We start school back up. I abandon the computer schooling because it just stopped working. Why, I don’t know. But it did. I am so afraid of his reaction to “paper school” because he reacted SO negatively to it in August that I tucked it away. Until now. He knocks my socks off. He does AMAZING! Not just the first day, either. I’m talking two straight weeks of wonderful school days. Yes we backed the curriculum up nearly to the beginning of the school year, but we’re doing two days at a time and most importantly he’s GETTING it and he’s actually feeling successful!

-He scares the bajeezers out of his Dad and I in Wal-Mart, when he insists that our cart is on fire…the one he was supposed to be sitting in. Because we still have to sit him in one or he’ll be all over the place. It’s kind of awesome. Only not. Anyways, so yeah, we were all like, “Whatever, Javan. You just don’t want to sit in the cart like we told you to” and we put him in the cart. He screams bloody murder, “OW! OW, IT’S BURNING ME! IT’S BURNING MY BARE BOTTOM!” And tears streaming all down his face. He isn’t acting. I pull him out of the cart and hold him to me and just look over his shoulder at my husband. Our eyes meet and we are instantly both more terrified that we weren’t the only one who thought that was real. We had planned on shopping the clearance aisle, a favorite spot of ours just after Christmas. Javan was so excited about that! I was pretty sure I didn’t care any more. I just wanted to get out of there fast. He couldn’t understand why, WHY couldn’t we shop for clearance toys? I finally snapped and said, “Because you can’t tell if you’re on fire or not, and Mommy’s not okay with that.” Oh, how I wish I hadn’t said that. From that moment on, it was just “pretend.” He didn’t really see or feel fire. He just made it up.

-Javan receives a gift of a DIY robot kit where you use things from around the house and make them into robots. He becomes obsessed with robots. I’m thinking this is something we can use. Something we can build on to give him a foundation of knowledge that he will most likely need in the future. If that future is one in robotics, fantastic. If this is just a phase, still fantastic. He’ll be learning about electronics and computers and you know that information will come in handy in twenty years.

-Not only does Javan become more and more involved in his own created worlds based on whatever cartoon or movie he’s seen recently, especially if one of the characters is a beautiful girl, but he becomes obsessed and constantly, constantly insistent that he have a costume. Whatever costume he thinks he needs that day is absolutely the most imperative item on our to-do list. If I hear another word about costumes I will combust. Not spontaneously, either. No, I have actual plans to combust the very next time I hear a whiny plea for a costume that is impossible to make first thing in the morning before I’ve emptied my bladder, even!

-It is next to impossible to gain Javan’s attention long enough to teach him anything in school. I’m trying so, so hard to get him to look at the word on the page. Look at the word. Look at the word, Javan. Look at the word. What am I pointing at? Javan. Javan. LOOK AT THE FREAKING WORD! Wow, yep, I really yelled that loudly at him. He then quotes the Proverb we’ve been learning. Proverbs 29:11 “A fool gives full vent to his anger, but a wise man keeps himself under control.” Still with raised voice I say, “I know! But you’re frustrating me so badly because you will not look at this word. You’re making me be FOOLISH!” He looked at me with such sweetness and said, “You’re not a fool, Mom.” Then he quietly walked to the table, sat down, and read the word. Well, don’t I feel like dirt? Some days I just don’t know who or what I am. I just get through it the best I can.

-We have an appointment with the psychiatrist. I am so nervous because of the Walmart hallucination. We’ve talked about possible schizophrenia and I’m afraid I will hear something like, “Well, that confirms it. Childhood schizophrenia. I’m afraid it only gets worse from here.” I feel so, so, SO much better after leaving the office. The doctor is indeed perplexed by my son and by the hallucination/pretend fire, but he doesn’t lose hope. And he doesn’t say the word schizophrenia once. He says Javan could have really believed the cart was on fire. He could also have seen a static spark off  part of the cart. Those things really do shock a lot. Or a bright light glinting off of it a certain way. Well, I hadn’t thought of that possibility.

He ALSO points out some really positive changes he sees in Javan. Javan has been seeing him for a year and a half, two years, somewhere in there, and he said this is the FIRST time he has felt that Javan was interacting with and connecting with him as a human being. He said he usually feels like Javan treats him sort of like a piece of furniture in the room, which I can see…he’s usually up in his space, under the desk messing with his feet or legs or picking through the trash can under there or messing with the desk drawers. This time the doctor said Javan seemed really present.  Being present in reality has become a real big issue for us.

He did, however, also notice Javan’s EXTREME hyperactivity. The child never stops moving. Never stops talkingEven when he runs out of words, he just makes sounds and sounds and sounds, ugh. And he also noticed and shared our concerns over Javan’s rapid weight gain since we upped his Risperdahl. I did a BMI calculation and it said he was “obese.” Psshhh, I don’t really think he’s obese, but we can see the belly becoming more pronounced. At this point the doctor drops his head into his hands folded on the desk, and says, “You are really, really not going to like what I have to say now.” Um, yipes? “I think we should try him on stimulants again. It’s been over a year since we’ve tried one. It would slow him down and also curb his appetite so he could maintain the positive effects of the Risperdahl while contradicting the negatives.” He’s right. Man, I didn’t want to hear that. Because stimulant ADD medicines, in past trials, have made my son aaaaannnnggggrrrrryyyy and mean…sort of like the Hulk. Only slightly less incredible. So, yeah, the hubs is out of town for a few days. We’ll do the stimulant trial after he returns. Dear God, save us all.

-For the first time, I am actually proud that my son lied to me. He lies all the freakin’ time, but usually I, you know, don’t like it and stuff. My child sits down to dinner tonight and declars it delicious, even eats several hearty bites of it before announcing himself full and asking to be excused. Later, when he is again hungry, I offer him his dinner plate once more, and he says he didn’t really like it. I am perplexed. He then tells me that he was just tricking me…he sort of looks worried that this was a naughty thing to do, until I say, “You mean, you were just trying to be polite?” Yep, that’s the one! He was trying to be polite! He thought of someone else before himself!

-All in all, I’d say the big picture is looking good. He’s not doing as well right now as he was during the blessed month of December. He’s so terribly unfocused and difficult to teach or even talk to. Because saying a sentence requires him to be undistracted for seven seconds. It also requires him to be quiet for that long. Sheesh! But I remind myself that those are SMALL picture annoyances. The small picture right now is frustrating. The big picture looks bright. I’d say that’s a good trade-off.

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