To continue from previous post:
There were a few people that I was about to respond to, and then we lost our house internet for a few days (construction workers broke the street line). Each (in my mind) required more than a simple response…so please allow me to apologize for not getting back to each of you…and thank you for the kindness and understanding that you each show daily.
We are the parents of the 14 year old boy who is dx Early Onset Scz for 7 years now.
We also have an older boy by one year, who is in High School here.
I honestly had found no other group on the internet for many years after his initial psychotic breaks. I guess I didn’t look deep enough, or perhaps, I was afraid to face the reality of this dx? In a way, I hoped that meds would “fix everything”, or he would “grow out of this”. Denial, grief, negotiate, repeat…I also didn’t feel comfortable talking too much online about our boy. After all, our initiation into this illness with our son first came when he was 3 years old. Pdocs said it was rare for a child this young…so I didn’t expect to find anyone who could relate to a child seeing blood on the walls, and rabbits following him around so they could bite chunks out of him/us when they got their furry-chance. (Think Monte Python white rabbit. THAT’s what I thought he was imagining. Just imagination.)
For ages now, our son has been asleep. If he’s not asleep, he’s in zombie land. There’s no other way to put it. His last suicide attempt was almost 2 years ago, and although he’s no longer within the realm of those thoughts, the increase in meds (or the condition) has somehow changed our boy from the “super sweet kid with issues” to someone who is…well, “dazed”? or “simple”? or “slow”? or…well, as he puts it: “loopy”. Heavily medicated, sleeping, gaining weight, and slowly becoming a hermit. (His words…he wants to be a “hermit”, basically isolate.)
Then…he woke up.
I’m not kidding.
About two weeks ago, he woke up.
He’s awake now in the morning. He stays up until early morning hours as well. He honestly cannot sleep at his “normal” time of 8pm…he’s up far longer. It’s worse if he lays in bed, so I’m letting him stay up, as long as he follows safety protocols and understands that “nighttime thoughts” can be worse from lack of sleep. I check and check throughout the night hours (I wake at 4am, so I’m exhausted with these night checks…but he’s okay it seems.) Sleep hours now? 1 to 2am bedtime, some days it’s 3 to 4 am. Wakes at 7 or 8am, may return to sleep for a few hours, OR may stay up until the next 2am point. He may wake at 10, and then he complains that he slept too long. What has happened?
He’s active. ACTIVE. Remember the kid who couldn’t make the walk to his brothers High School? Whose hands are as soft as butter from lack of activity? He helped me move a desk from one room to another yesterday. Broke down his desk, cleaned and organized computer wires, and organized his “world”. He helped with laundry! He TOUCHED and moved the clothes. He actually carried the hamper. He was exhausted, but he did something for a change. His movements were stiff, and his hands shake like crazy, but he is STILL trying to do things.
This is not our usual boy.
His art is off the charts. He draws for hours now. Day or night, he’s drawing. I asked for him to use his love of YouTube and search videos on drawing in lieu of school work. We honestly thought this was the only way to get him to open his mind to what he was doing, instead of forcing page work, his dozing his way through, always on the verge of destroying the page he’s “working on”.
He’s studying everything he can about drawing. It shows too, in his art. I wake in the morning, and the refrigerator, my desk, the walls, each have drawings hanging all around them.
He’s TALKING. For about 2 hours at least a day. Only with me…and I can’t always follow it (doesn’t mean he isn’t making sense, I’m sleep deprived, and don’t always understand the older boy, let alone our younger one!) But, he’s talking. This is the same kid that I wrote to you all about with extreme sadness as to how quiet he is. How DAYS can go by with silence. Now? He’s talking for hours.
And…it’s tiring. I (sadly) am finding this very hard to keep up with at times.
Yesterday, he announced out of the blue, that he “needs to take up gardening”. (I have a garden…he didn’t connect the two. I showed him the balcony…he just said “ummmm”, and went on with his thoughts.)
I honestly don’t know what to make of it. I’m happy, but I’m also not. Something in my gut says to be careful. This is sleep disturbance, with a drastic difference in thoughts and actions. And yet…he says the meds “are perfect”, and everything is great.
I finally asked, if he was having hallucinations at night? He’s drawing the “scary” creatures during these hours, and I found a stack of them tucked away in the desk drawer. He found a way to put the time and date on his pictures in an artificial watermark. He says this way “no one knows” what time it was, just me, so that way: “I know”.
Yet, he denies that these are hallucinations like before. He responded (to my surprise again, as this refers to a conversation I attempted to have with him months ago) that I told him that he could use his drawings of hallucinations to design creatures for video games. That only he could visualize what is really scary, as he knows this all too well and can create unlike anyone else. (I did tell him this, when he entered suicidal ideations again recently. I told him this to give him some direction, so hope that he can do things to contribute to life…to have a purpose…to turn what is a nightmare at times, into something he can control, or at least: manage.)
He wasn’t even listening to me way back when.
At least I didn’t think he was.
He used to sit with a billion pillows and blankets for hours. All day…the only time he moved was to bed, or to the toilet. He tossed out the pillows a week ago, stating it was “bad for posture”.
Okay, these are all “good things” right?
Nearly forgot…he also said I needed to bring back math into his schoolwork…as he’s getting “behind”.
Behind? We couldn’t even do schoolwork! Two weeks ago he refused to work anymore on math, as the worksheets had “little kid designs” on it. (Of course it did…you’re still at “little kid level” of math! I did NOT say this…but sure thought it!!!)
So, I’m now remaking the “little kid” sheets into adult style math pages. And, we’ll start with multiplication…again.
This is all great.
Except…that brother now is “irritating”. Brother “knows what he’s doing”. It’s “that silly song”, or brother is “making a face” that he “knows” he doesn’t like.
This has not happened before.
He didn’t know I was crocheting in the living room a few nights ago. I stayed up to crochet, and keep some sort of adult supervision with these late nights. I heard older boy go into kitchen, happily getting something to snack on. Then, younger brother exploded. The profanity! So many foul words, and the anger!!!
He didn’t know I was listening.
That’s just being a jerk. I think? Except he took me on with anger too.
That’s a fine line with him.
I did make it clear that if I couldn’t trust him to be kind to his brother, he would lose the opportunity to stay up.
Let’s be honest here. How am I really going to keep him in bed?
He told me later, privately, that he was scared…he could feel his anger taking over. He couldn’t stop it, but was telling himself to do so. Still, he kept thinking brother was causing it. For now, I told him to reach out to me, or Dad, but leave brother alone. It’s not fair, it’s wrong, and brother doesn’t deserve it. Think for a minute about the things brother is dealing with. He was happy that night as he succeeded in his recent endeavors. It was wrong to attack brother, when as a family we cheer for one another. It was a time to support, definitely NOT attack. Brother didn’t do anything, I was right there, a few feet away…I can testify to this.
Neuro Pscyh eval is at the end of March. I’m going to continue to move with the flow for now, and let them find out as much as they can. Boundaries about behavior towards brother of course, but the sleep patterns…well, no clue what to do there.
Odd…for years pdocs ask FIRST about his sleep? (SECOND question is always about suicidal ideations. THIRD: is always about any recent aggression.)The answer has always been he sleeps too much. Pdoc would respond that was the hoped for. To sedate and calm post suicide attempt, and would hopefully remain this way for “a long time”.
And why am I not overjoyed?
Perhaps, I’m tired. (My IBS is acting up right now, dang it, and may impact my perspective.)
Thanks for listening.
I will say this: I took this picture yesterday morning before older boy left for school. It was nice to see both my boys in the same space talking to one another.
I’ll post artwork later…there’s too much, and I have to use several devices.
(For those of you who may be uncomfortable with family/private photos…I find them to communicate far more than words. The boys are okay with it, as long as I speak respectfully about them. Excuse the laundry on the table.)