“No news is good news.” I’ve titled this post “news,” so you can catch my drift as to where this is heading.

E-Niner has had homework this week for the first time in his life, and he’s handling it about as poorly as anyone can handle homework. He says he’s nervous about it before we start, and as soon as his fingers grip the pencil, he’s yelling, crying, and trying to negotiate his way out.

Last night it took him an hour and a half to do his homework. Tonight it only took 45 minutes for approximately the same amount of work. He was an anxious mess doing it — screaming, crying, scribbling out the directions as hard as he could, flinging the sheet across the table with such thrust it flew three feet past the table before it floated down ever so gently and slow enough for him to catch it and crumple it.

It was awful. But that wasn’t the worst of it.

The worst of it — and what scares me most — is the glimpse of psychosis he had tonight. I thought we were done with psychotic episodes. I thought we ruled it out as something within him but rather a reaction to medication. After the hospital visit in the spring, psychosis seemed to have been driven the hell outta dodge. Psychosis must have legs because tonight it came knocking back on the door.

After homework was done and after he had a bath, E-Niner sat down to the table for a snack before bedtime. I asked him if he wanted to talk about what happened with homework. He said, “I was scared. I was really scared. I was scared of all those ones.” (He meant the numeral one. Part of homework was math.) When he said “all those ones,” he was pointing at the blank wall.

“What ones are you talking about?”

“The ones all along the wall. Can’t you see them?”

Nope.

“And they were talking to me.”

Great.

“What were they saying?” I asked.

“They were saying ‘be careful.’”

Oh, no. Hearing voices is not a good thing. Hearing voices is a marker for schizophrenia. Oh, no.

“And remember that thing behind the tree the other day?”

He did mention something behind the tree the other day, but I blew it off.

“That thing behind the tree was looking at me, and I don’t like it when it looks at me. You hafta tell it to stop.”

I just felt like things have been going so, so well. And now I see in a very heightened state of anxiety, he reverts into psychotic mode.

After the bedtime snack, his anxiety started reeling again. “Mom, stop my mind. Please make my mind stop!” he was saying to me. “You need to take me to the hospital right now so they can fix my mind again.” My heart broke. Jonathan held him close while I warmed a buckwheat wrap in the hopes of settling him down. He calmed down.

He calmed down, and then I ramped up. Why is this happening again? Could this please not happen. I will not let this happen and escalate. Is this even something I can control? Probably not. But I can influence it. I can influence it greatly.

The only way to stop psychosis like his — psychosis that stems from a highly anxious mind — is to stop the anxiety from increasing to that level. I can do this. I can help him. We’ve been doing it. A new school year and homework has thrown him for a loop. He just needs to get back on track. Maybe ease into things a little more somehow.

It’s not escaping me that earlier this year he was admitted to the hospital three weeks after starting school. Next week will be three weeks into this new school year.

Truth be told, I feel much better equipped to handle this than last year at this time. Tomorrow will be phone calls to school — teacher, psychologist, social worker and his own private art therapist and psychiatrist. We need to come together pronto.

News.

What a strange read, delving into the mind of a person with schizophrenia. Reality for her was inside herself, and she kept reaching for her analyst to save her. Her analyst was the only person with whom she had any connection, and this connection waxed and waned depending upon the analyst’s response to the girl.

I learned a few things from the book, that has helped me gain some perspective on what may happen to E-Niner when he’s having a psychotic break.

First, I’m going to talk with him either in the third person or as the characters he would like me to be. I will do this especially around events that seem to upset him — bedtime, going to the bathroom, eating. Renee, the writer of the autobiography, always felt much more at ease when she was addressed in the third person and when others addressed themselves in the third person. It was as if being “she” or “her” or “I” was just too much responsibility.

There was a time when E-Niner was younger that I thought his body was too much responsibility for him, that he shouldn’t have been allowed to be in charge of his own body yet. He was three, an age where most kids get where their body stops and starts, what is relatively dangerous or not, where they might need some assistance from a parent or other caring and familiar adult. This was the age that he nearly sliced open his finger, that he banged his head on the school’s front step so hard he had a goose egg that did not diminish for three days.

And while now — for the most part — he seems to be less dangerous with his body when he is regulated (not psychotic), now it seems like that analogy might fit with his mind. Maybe right now his mind is just too much responsibility for him. If someone could “hold his mind,” somehow, and could assist him in that warm, third person way — maybe it would help.

By the end of the book, Renee enters reality. Her analyst indicates that she is cured, though there is nothing in the book to indicate how things turn out for Renee in the future. The book seems to be written when Renee is in her twenties — during the mid-1900s. So it is possible for Renee to have lived and died by now. I wonder what ever happened to her. Was she truly cured or was schizophrenia in remission for that time?

The other interesting thing that Renee mentions is that while she says she hears voices or sees things, she knows they don’t exist as hard objects. She is at able at once to discern reality but weave onto it the voices, people and objects of her mind. I see that a lot with E-Niner, too. I often wonder how it is possible for him to be so grounded and here with me, but simultaneously not present. I have often thought it is as if he lives in dual worlds, and after having read this book, I now understand that it’s possible I’m not that far off.

Now that I’ve accepted E-Niner’s psychotic condition — now that I’ve grieved for him, for our family and for our collective lives — I’m entering a new phase, one of learning, seeking, discernment, understanding. I want to understand what is happening in his mind in the hopes that I may be the one to hold it and bring him back.

Next up, The Man Who Mistook His Wife for a Hat.

After another pre-bedtime psychological breakdown last night, we have decided to resort to a sleep aid: chloral hydrate. The plan is to use this short-term until we can re-establish bedtime. Give it to him before the breakdowns to make him sleepy so that he’ll sleep even before he has a chance to think about bedtime. Get him into a new pattern.

For the past five years, I’ve been gushing that we never have any sleep problems with E-Niner. He goes to bed at 7:30PM, wakes up at 7AM, and is an awesome sleeper. Rock solid. It was my one thing that I hung on — sure, the days are hard, but at least he’s a good sleeper!

Hopefully we can nip this in the bud (I see those words coming back to haunt me — EVERYBODY, knock on wood, right now!), and get him back in a regular sleeping pattern.

One woman I’ve been e-mailing with whose son has psychotic episodes said that they blow away the images he has in front of his face. It is like a ritual; whenever the images come, they just blow them away. It teaches the child that he’s in control. So we’ll try blowing the fish away this afternoon.

We’re also going to do an all-out fish exorcism tonight. We’re going to round up all the fish in our nets and flush them all down the “poop tunnel.”

E-Niner said he’s been seeing clown fish, star fish, angler fish, and then he named some other species of fish that I’d never heard of and then some sort of crustacean. Of course the child doesn’t just see regular old fish, of course he sees many different varieties and can name them all. I should ask him what kind of whale it was…

E-Niner was watching one of the deleted scenes from his Curious George movie DVD. In it, Ted (the Man in the Yellow Hat) has a nightmare.

E-NINER: I’m just Ted.

ME: Are you saying that because you had a bad dream?

E-NINER: Yeah. I had a bad parking lot dream. [Actually, Ted was having a "bad parking lot dream."]

ME: I think you’re remembering your bad fish dream.

E-NINER: That wasn’t a dream. I had fish right in front of my face!

ME: It was a dream. That didn’t really happen.

E-NINER (adamant): Yes, it did! There was a whale right by the ceiling!

ME: E-Niner, think about it. Fish need water to live. Our house doesn’t have water in it like that.

He considered the thought. Maybe I was getting to him.

E-NINER: I know fish need water.

ME: Then how could they have been swimming in front of your face?

E-NINER: Magic, mom. Because of magic.

And then he went off, clicking together his toy flowers, “pretending” to be Ted.

Evan had an hallucination last night.

Apparently he was seeing fish tails underneath his blanket and it scared the beejeezus out of him.

Not sure what to say about it, except that I am numb and exhausted. Dealing with a psychotic breakdown at 3AM does not make for a good night’s sleep, especially after having dealt with one only a few hours before.

E-Niner is losing the top tooth on his left, and again we are dealing with a very angry, crazy, psychotic child.

There’s not too much more that I can say except that I’ve been dealing with that fiasco, and not here as much. There’s only so many times I can detail the blow-by-blows.

Can’t wait until the tooth falls out. It’s hanging by a thread.

You’d think I’d be over this one now. Psychosis. The specialists we’ve seen have always kind of talked around it, a possibility. The word is written in E-Niner’s neuropsych report, mentioned something like this: E-Niner has “irrational (psychotic) thinking.” I’ve written about it on here like it’s no big deal.

I see it. I get the gist, but nobody’s ever flat-out, definitively, told me to my face. Until today.

Today the psychiatrist told me that E-Niner probably isn’t intensely pretending to be WALL-E or Thomas or that I’m Percy or that T783 is Nemo. The psychiatrist said it’s psychotic, psychosis. He uses the characters’ scripts to create some kind of structure within his internal world that is all sorts of haywire.

He said it, out loud, no question, no dance-around, finally. It was like a weight of wondering was lifted for me, but at the same time, who wants to hear that their child suffers from nearly round-the-clock psychosis?

I took it pretty well in the psychiatrist’s office. I wasn’t surprised. If you’ve read this blog long enough, I’m sure you’re not surprised either. What happened today was that I reached a deeper level of understanding. The pretending — the psychosis — is not going to be something he one day grows out of. This is something we’re going to have to battle — that he’s going to have to battle — for a long, long time. Possibly his entire life.

Luckily, I had a meeting with my own analyst today. I wasn’t nearly so “no big deal” in that office. When I told him the definitive news, I was a mess. I thanked the heavens that I had the two appointments only a few hours apart.

In between, I shopped.

I was in that Surreal place I’ve talked about before. Looking at the cutest summer sandals all the while thinking, “My son is psychotic, my son is psychotic.”

And then I headed to the make-up counter. I’m not a huge make-up person, and haven’t had anyone do my make-up since my wedding. It was as though I was tethered to the department, and it was somehow calling me home.

Someone caught my attention, and in a moment I was sitting with the lady at Laura Mercier in the high stool getting a nice, refreshing toner splashed all over my face. She started with toner and went to town. I was done and looked like a different, fresh face. It was strange as I looked at myself transform in her mirror. If I didn’t feel good on the inside, at least I looked good on the outside.

But I wondered, as I gazed at myself, can make-up really hide my pain?

I informed absolutely no one that I would have a phone call this afternoon with the National Institutes of Health regarding what’s been going on with E-Niner. I didn’t know if anything would come of it or not. It was a memorable call and probably one of the most efficiently attained helpful bits of information I’ve received about E-Niner.

In a nutshell, the social worker at NIH said that psychosis and PDD-NOS sometimes occur simultaneously. What’s unique about psychosis in conjunction with PDD-NOS is that the psychosis is focused on a child’s interest — as E-Niner does with WALL-E or Lightening McQueen or any number of other Disney characters up his sleeve.

So that was comforting to hear. Why didn’t I know that before? Why didn’t anybody ever tell me that? Maybe not that many people know.

After going through E-Niner’s history, her prognosis was that E-Niner will either grow into the PDD-NOS diagnosis, bipolar disorder or schizophrenia. She said that schizophrenia can occur with or without PDD-NOS and with or without bipolar disorder, so one doesn’t rule out the other.

I asked her at what age she thought these things would come together and we would have a better idea of what was going on. She gave me that therapeutic caveat of “we really can’t predict the future or make any guarantees,” but she guessed around age seven. That’s two more years.

She was most interested in his genetic abnormality and requested that I forward his neurological work-up and the results of the genetic testing we’ve done. She thought the NIH geneticists would be interested in that.

So that’s where we are. I’ve got to say that it feels so good to finally have somebody have the balls to give me prediction on where they think things are headed. I can’t emphasize how comforting it feels to have some sort of road map — directional – on the trajectory of things.

Almost every other therapist we’ve seen has told me that we have to live in the moment and deal with where E-Niner is right now, and that’s all well and good. But to live solely in the moment and not have any idea of the future is not always easy. At least not for me.

The prediction doesn’t make the road any easier or gives us any answers, but it opens up a path thick with brush that I had been previously working on by hand with a machete.

Joe told me that as we drove on Sheridan Road, rounding the corner past Loyola University, where the road meets Devon Avenue.

It was before E-Niner had any type of diagnosis. It was before I wanted to believe that there was anything remotely the matter with my beautiful baby.

The words came out of Joe’s mouth, and I was pissed. “Don’t say that! He doesn’t have special needs!”

“Most kids his age can already [insert lagging developmental milestone now faded from my memory here].”

“So he just needs extra help,” I rationalized.

“Like I said: special needs.”

I sat in the car, arms crossed, in disbelief that my husband — the only person in the world who made “our” son plural with me — could say something so, so not true.

It was about a year before I swallowed the special needs pill.

During the course of that year, I stole glances at the Special Needs section of the bookstore. It was as if that section were a bookstore strip joint, and I would catch cooties from it just from looking.

In the same way that a strip joint does tempt curiosity, though, I would find myself quickly glancing at titles. Something about dyslexia here, what to do if your kid can’t talk there.

My son was not “special needs.” (This was before I learned that referring to someone as their label is more than not politically correct, it ignored their humanity entirely.) I surmised he could probably read just fine one day. And can we say motor mouth? These were not my problems.

Fast forward a few months to his sensory processing disorder diagnosis. Looking to find out more about the condition, I headed back to the bookstore — to that dreaded Special Needs section. And there they were. Books upon books upon books about sensory processing disorder. It’s been my section ever since.

I check back every now and again to see if there’s any information I could possibly be missing, that I haven’t yet ferociously uncovered in my undying quest for Answers.

It’s a puny section, Special Needs. For how many people out there are raising kids with them, it seems like it should at least take up half a row. Not at my bookstore. It’s area is about three feet wide. That’s it.

As I looked at the titles today — carefully reading every one, since there weren’t too many to peruse — I’d guesstimate that fifty percent of the titles were devoted to autism spectrum issues, a quarter on ADHD, a handful on bipolar and anxiety, and the rest were personal accounts of what it is like living with or parenting someone with special needs.

But where was the book on childhood psychosis? That’s what I was looking for. Not there. And then I realized my frustration.

E-Niner’s got special needs in spades — the more popular ones like SPD, ADHD and, some professionals believe, PDD-NOS — but he’s also got this rare condition that puts him in a class beyond the norm. Psychotic episodes. They don’t have special needs books on that in my bookstore. And in all of my research and connecting with other people, I haven’t found another peer who has it.

I know plenty of kids with PDD-NOS, ADHD, SPD, anxiety — all issues that E-Niner has. But I haven’t met one child with psychosis. In my hungry search last year, I went straight to the National Institutes of Mental Health. They were flabbergasted that I would even speak of such a thing about a four year old. They didn’t know of anyone either. They also suggested I get second opinions.

But time has run its course. And we have had second opinions and thirds, and a neuropsych evaluation to boot. I just want to find out more about this condition. Though, I’m not sure what more it is I need to know. I’ve lived with it — lived through it with him — every day. It sucks.

So here’s my plea. If you know of anybody out there — any child out there — who has psychosis, can you send their parents my way? I’d love to trade notes sometime. If only to feel less isolated.

Boredom took me to the bargain book table in the children’s section of Barnes & Noble today, but destiny led me to her: an Irish woman who was old enough to be my mother, also named 8741, who married outside her race (Arab) and works in a therapeutic school and who raised (and still is raising) her adult emotionally disturbed son.

As I combed through the shelves for a book about T783’s new favorite topic, Pinocchio, she warned me, “Be careful that he doesn’t get obsessed.”

That was a strange thing to say, I thought — a strange thing to say about my typical kid T783 but something right on the money to say about a kid like E-Niner.

Our conversation meandered from Pinocchio to the topic of race — how none of her kids look like her either — and then to special needs. “I think I’d like to adopt a child with special needs,” she said.

I’m sure I looked at her with a face that yelled out “Why the hell would you want to do that? You have no idea.” But my outside voice said, “Interesting you say that. My older son does have special needs — but not physical ones.”

And that’s where two kindred spirits collided.

“Do you walk on eggshells around him?” she asked.

“I used to,” I said. “I could. But I don’t. Not anymore. I’ve decided that no matter how violent he gets, he needs to know that I am in charge.”

She looked impressed. I sounded impressive, but then added, “Though that doesn’t mean I don’t get absolutely frustrated and utterly exhausted. I’m not saying it’s fun or easy.”

“Oh, I know it’s not easy,” she said. “I work at a special needs school with all sorts of kids. In fact I’m here here today because one of the kids with autism knocked me on my butt and I can’t go back to work until my tailbone heals.”

She told me all about the school where she works — which could potentially be a place E-Niner could attend. She told me about the types of kids who go — many with physical disabilities, many others with emotional disturbances.

I explained to her that what is so difficult for me is that E-Niner’s issues are not apparent on first glance. He looks like a normal boy. When people treat him like a typical kid and he doesn’t respond in a typical way, people don’t get it. Sometimes they even get a little offended.

And then she started telling me about her son.

He was infatuated with The Little Mermaid when he was young — obsessed. He decided that he wanted to be a merboy and marry Ariel. His whole life became the The Little Mermaid movie, and everyone he encountered had a part. He pretended this story for three years.

I told her how my son has converted his family and environment to suit the Disney flick of the day — Chicken Little, Cars, Wall-E. How when he’s Wall-E, our house is “earth;” our car is the spaceship; how Joe is M-O (the robot that constantly cleans — a fitting analogy).

“I don’t want to alarm you,” she said, “but we came to find out my son is schizophrenic.”

And do you know what I said to her, totally off the cuff?

“Oh, don’t worry. I’m not alarmed. We’ve been told that E-Niner has psychotic episodes. So that whole business is nothing new to me.” That is what my outside voice said.

My inside voice was all, “What the fuck you talking about, woman? Don’t worry? You’re not worried in the slightest that a whole slew of psychotherapists think your boy has psychotic episodes? Speaking of psychotic, what kind of psycho bookstore conversation are you having right now? ‘Can you hand me that 50 percent off Frosty the Snowman book, and did you find Seroquel or Risperdal more helpful anti-psychotic meds?’”

All the while, while my insides were freaking out, I realized that this woman has been in my shoes exactly. I’ll bet she’s freaked out hearing the things come out of her mouth before too. I’ll bet there was a time in her life when she’s told some random (and seemingly empathetic) stranger that her son had psychotic episodes, and later had trouble digesting it.

Here is a mother — finally someone — who I can relate to. I have been searching and searching for a person who’s been there, done that, and here I met her in the bargain section at Barnes & Noble. And not only does her adult son have special needs, but she works at a therapeutic school, and she’s had to deal with raising a multi-racial family.

I felt like she was me fast-forwarded thirty years. And look! She survived! And look again! She works in a therapeutic school — she still wants to help! And look some more! She wants to adopt a special needs child. Wants to. Even when her own schizophrenic son is living with her at home. Holy baloney, people survive what I’m going through!

I’ve seen the future. It ain’t so bad…and I have Destiny to thank for it.