Isaac is still at DT in “partial hospitalization.” Partial hospitalization has been a great thing for Isaac (even though it means tons of driving and scheduling and craziness for Mom)!  Isaac works with the wonderful staff members there, including a fantastic psychologist, every day. We love her and she is helping him work through a lot of his issues. She meets with me (and Hubby, when he can make it) for an hour every week. Her thoughts are always helpful, she always listens attentively, and her ideas are very useful (and never condescending). I couldn’t be more pleased.

Isaac also meets with a psychiatrist at DT at least once a week. We also like him a lot. He is very attentive and has some interesting ideas on how to help Isaac. He is also a magician at pulling strings. For instance, MONTHS ago, our old psychiatrist (pre-PPH) suggested we get Isaac in with a well-known (world-famous, really!) neuropsychologist. She is the end-all, be-all of neuropsychology and we’ve had MANY doctors/therapists refer us to her. But the best anyone could do was put him on a YEAR-LONG wait list! No matter who tried to get us processed faster, we just couldn’t move up that wait list. Well, our new psychiatrist was able to work his magic and explain the urgency of Isaac’s situation and this doctor and her team were able to squeeze him in, little bits at a time, a few hours here, a few hours there, and yesterday he had his final appointment with them. A whole year before we were scheduled! Haha. We look forward to the results of this testing. I expect it will be very intriguing. I was not in the room for any of the actual testing, but it included an unconventional IQ test (unconventional because a standard IQ test wouldn’t work with someone like Isaac–it wouldn’t demonstrate his actual IQ). The testing also included a Rorschach test! I didn’t even know that was a real thing anymore, but it is. I’m very interested to get the results from that one! Anyway, those results should be in in the next couple of weeks.

He’s also been able to see the neurology team at Primary Children’s Hospital. Our purpose there was to find out if perhaps some of Isaac’s issues were neurological. That would include things like seizures, brain structure abnormalities, and growths/tumors (either cancerous or benign). They were able to unequivocally rule out any neurological condition. So that’s good. We can stop wasting our time barking up that particular tree.

So, if you’re keeping track, that’s pretty much every single brain-type doctor in the state of Utah. We’re single-handedly keeping them all in business. Psychology. Psychiatry. Neuropsychology. Neurology. Brains, brains, brains, and more brains.

Isaac’s medicine routine hasn’t changed a whole lot since the PPH, nor have his diagnoses (autism/OCD/Tourette’s/Schizoaffective Disorder). Even so, and even with such an awesome team of therapists and doctors, everyone is still baffled by him. But the medicine does appear to be working when it comes to mood/behavior. That’s not to say we don’t still have some bad days because, holy cow, we so totally do, but they are much less frequent. The psychosis, however, persists.

As for Isaac personally, he likes DT, but at the same time, he’s desperate to leave. He is so afraid of missing out on the world outside the hospital. He agonizes over not being at school where all of his friends are. He misses his in-home therapists. He panics over the idea of getting behind or being forgotten. Being forgotten is the scariest thing in the whole entire world. He has resorted to threats and bribes to get finished with his hospitalization. Naturally, that approach backfires. Poor kid.

And what IS the plan? How long does he have to endure partial hospitalization? Uh… Good question. No one seems to know. I’m not sure exactly what the deciding factors will be. But it was suggested that perhaps at the beginning of October, he might be ready to slowly transition from day treatment to school. We’ll see.

Whew! There it is! A whole month condensed into one verbose email! Love and gratitude to you all!

I spent the morning cleaning Isaac’s room. “Clean and organized” are not really words that describe my housekeeping skills (or Isaac’s…) anyway, but you can imagine that in the whirlwind leading up to Isaac’s hospitalization, things were especially chaotic. As in, curtains literally ripped from the wall, garbage cans emptied on top of clean laundry piles (or were they dirty?) and retaliations for time-outs in the form of bodily fluids. Now, in a perfect world, I would have Isaac clean up all of that stuff himself. But I decided that coming home from the hospital, if that was indeed going to happen, should include a clean slate in every possible way, including in his own space.

So I dawned my handy hazmat suit (if only!) and in I went. I was just vacuuming up the last spider (don’t tell my arachnophobic Hubby that I saw a spider… or two… million…) (Bud, however, would be proud of me for not killing them, just ridding myself of them) when my alarm chimed that it was time to head to our big meeting at the hospital.

Hubby would be meeting me at the hospital, but he was running a little late. So I was shown into an “interview room” at the hospital to wait for the psychologist. Now, as luck would have it, Isaac’s usual psychologist at the PPH, who has been working with him since Isaac’s first day there, is out of town at a conference this week. He warned us about this and told us that his replacement for the week would be handling Isaac’s discharge.

Well, in she walked, totally clueless about my kid, having met him a grand total of once. She started in on a spiel, but it was just the same old regurgitated psych talk. I tried to be patient, because maybe she didn’t realize how many millions of times I’ve heard this exact speech since this is the first time she and I were meeting each other. And maybe she was building up to the good part, or something. When Hubby came in a few minutes later, she started over and I just kept waiting for something helpful or original to be said. But it became painfully obvious that she didn’t actually know anything about Isaac or his situation. In fairness to her, this was not her patient and she had been forced to step in at the last minute on a very complicated case. But I spent most of our conversation teaching her about Isaac rather than the other way around. And I found that very unsettling.

I kept waiting for our psychiatrist to walk in–Isaac has actually had three psychiatrists while at the PPH but the latest one was with him the longest and while we didn’t always see Isaac the same way, I really came to enjoy working with her. And at least she, you know, KNEW him. Unfortunately, there was a crisis that she needed to run off to (not rare at the PPH) and she never did make it to our meeting. So it was just us and the stand-in psychologist.

Sorry, I’m making this a lot longer than it needs to be. Suffice it to say, I found myself disagreeing with Stand-In a lot. At one point she brought Isaac in and asked him some questions. Some of the things he said showed that he had memorized some of her spiel, which, to her, sounded like “progress,” but to me sounded like the same old crap. Memorized lists that never actually make it to his heart and soul. Yes, he can tell you that running away is dangerous (and no, you weren’t the first person to teach him that). But guess what–he runs away anyway. And on and on and on.

And then Isaac responded to one of her questions with an answer that set off flaming red alarms for me–an answer that showed me unequivocally that he was still totally out of touch with reality. And if this was what he considered reality, then he still very, very dangerous.

She didn’t blink an eyelash at any of this. I started to push back and I started to push hard. I tried to explain that I’m not saying that he ISN’T ready to come home, I just haven’t seen sufficient evidence that he IS. She kept saying things like, “his psychosis is better now thanks to the meds and therapy!” No! It isn’t! She just doesn’t know what she’s looking at! I’m WATCHING HIM HALLUCINATE while she’s telling me he’s better!

Anyway, it was very frustrating for me. And, as usual, I had a really hard time articulating any of that. Hubby didn’t feel the same frustration as I did. I think he felt ready to bring Isaac home. He was actually pretty surprised at my reaction (but always supportive, even if he didn’t agree). In the end, though, it was clear that my/our thoughts on the matter (and, like I said, I don’t even know exactly what my thoughts were) were totally irrelevant. The farce that we had any say in this was exposed. A decision had been made. He was coming home. Case closed. Stand-In can go wash her hands of us and pat herself on the back for saving yet another child. (Okay, I’m not being very kind, and I apologize. I really do think she was in a tough situation. But I was realllly frustrated.)

She knew I was frustrated, so she kept reassuring me that Day Treatment starts tomorrow. And she’s right. It’s not like he would be coming HOME home. He’s coming home to sleep at night but he’ll be with therapists and doctors all day long starting bright and early tomorrow morning.

So, trying to set aside my frustration (and my loneliness in my frustration), I signed all the necessary papers and celebrated with a VERY happy little boy that he was coming home!

He walked with us through the big metal doors that had always been off limits and joyfully soaked in the world outside. On the car ride home, he asked about all the things that had changed since he’d been gone. Well, as you can imagine, not much in the world has actually changed in the three weeks that he’s been away, but three weeks to a kid feels like a million years. So cute. I’m really glad he’s home. He’s such a joy to be with. I just wish I felt better about the whole thing.

When I dropped him off at the PPH three weeks ago, it was so very hard. But I felt such a sense of peace and reassurance that it was the right thing to do. I was really hoping and praying for a similar feeling about bringing him home, and I just don’t feel it. But it doesn’t matter. He’s home. So we’re going to do the very best we know how with that and fight with all we’ve got to make it a good thing.

He’s home. He’s beautiful. He’s happy. He’s wonderful. And he’s sleeping soundly in his clean room.

A clean start for all of us.

And, of course, he starts his day treatment tomorrow.

OR DOES HE??! Ha! How’s that for a cliff hanger! Yes, there is yet another exciting twist here, but this email is oh-my-golly-too-long-already, so I’ll tell you all about it tomorrow.

Thanks for all the notes, texts, messages, and goodness sent our way today. We can’t ever sufficiently thank you for your amazing support through all of this. xoxox

But I did get to call him. I actually called him from the car while I was taking Mads and Bud to Provo. When I first tried to call him, the nurse told me that he was in a meeting with the doctors. So a few minutes later when he called me back, I asked him how his time with the doctors had gone. He said, “Oh, it was good. We talked about coping skills.” He was speaking so clearly! I asked him if he thought the things he learned about coping skills would help him, and again he responded that yes, he believed these would be very useful to him. He then talked to Mads and Bud a little bit (he was on the car’s bluetooth speaker, so we were all on the call together). Isaac was totally focused on the questions and comments and responded appropriately every time. It was so weird, because it was so… not weird! We brace ourselves for all sorts of hilarious, blurted out comments and totally random noises, etc. And above all, never expect actual answers to our questions. But this! This was like a real, normal conversation!

Anyway, there was some beautiful clarity. I was kind of holding my breath to see if it was just a fluke. But Hubby went to visit Isaac on his way home from work and ended up staying for a long time because he too found Isaac totally present and lucid. They talked and talked and talked. So this morning’s clarity appears to have lasted throughout the day.

Well, I’m not saying for sure that it isn’t a fluke, because… yeah. We’ve been blindsided before, just when we thought things were getting better. But for the clarity to last for so long, well, that feels a little different. It raises some questions. Are the meds helping? Was it just a really good day? What will we find tomorrow? Can we even trust this enough yet to call it progress?

The other phone call I got from the PPH today was from a psychologist who wanted to set up a meeting with us for tomorrow. This is the possible discharge meeting. As in, Isaac might be coming home tomorrow. We’ve been counting down to Tuesday, Aug. 8 for a while now, and here we are. Apparently, we will go in at 2:00 tomorrow afternoon and have a meeting with all the important decision-makers and together we will decide if he’s safe enough to come home. It will end one of two ways: 1, he will pack up his stuff while we’re filling out discharge paperwork and then he’ll jump into my car and come home. Or 2, he won’t. And we’ll make a new plan. And we’ll hug him goodbye. Again.

I guess my prayer tonight, then, is that if he ISN’T ready to come home, I need him to SHOW them that he isn’t ready to come home. I know today was a great day and I’m SO GRATEFUL for that! But what if he isn’t really ready? As much as I’m dying to bring him home, I don’t want to do it if it’s not truly the best thing for him yet. So if he’s NOT ready, I need him to demonstrate that. If he IS ready, great!!!!

Okay, so I guess either way, I’ll have some actual news tomorrow!

Thanks, as always, for your love and interest. xoxox