Day Treatment

Howdy, folks! It’s been a while!

Isaac left the PPH just over a month ago. It’s been an interesting month, to say the least.

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!

The frosting (is not) on the cake

Dear Sweet Tacos,

This morning, Isaac and I began our new normal. As we drove to DT, he was quiet but a little tense. When we walked in, the doctor I’d liked so much yesterday greeted him and asked him, “how do you feel today?” He whispered to her, “I’m scared.” She got right down on the floor with him and validated those feelings, confirming that it can be scary to start something new in a new place with new people. Then, picture chart in hand, she went over everything that was going to happen today. She was so great with him. I kissed him on the forehead and left.
He had a pretty good time at DT with just a few bumps in the road, and then he had a good evening here at home with Bud (Nugget and I had somewhere else we needed to be). They did all sorts of exciting things. They rode bikes and even baked a cake! Hubby texted me the following pictures:

The second photo arrived with the caption: “Uh, we might not have enough frosting for this cake. Wondering where it all went!”
Hahahaha.
Then tonight Isaac went with Hubby to pick up Hubby’s parents and sister from the airport. Isaac was really excited to see them. It landed him in bed just a little late, but it was worth it.
So, good day!
In other news, I will be publishing all of these “Isaac update” emails to a blog. Many of you know that I used to be a blogger–a rather successful blogger with ad revenue and good, steady traffic and lots of fantastic readers, many of whom became dear friends (many of whom are now receiving these emails!). I pulled that blog down about 5 years ago and never looked back. I can hardly believe I’m’ jumping back in. My purpose this time around for this blog, though, is very different. I just want to put our story out there, in case it could help anyone or be of interest to anyone. I know that when our crisis first hit, it helped me a LOT to read and hear other stories similar to ours. Honestly, without them, I might not have known where to go and what to do when it was clear that I was totally in over my head. And I might not have believed that there was light at the end of the tunnel. Anyway, I will remove some of the personal identifying pieces of information, but the emails will otherwise be published just as I wrote them when I sent them to you. I will send along that blog link when it’s up and running (actually, it’s already up, it’s just not yet running).
It is at this point, Gentle Readers, that I want to thank you for all of your interest, your time, your light, your prayers, your messages, your friendship, your guidance, and especially your love. It would appear that, for now, our crisis is over. That doesn’t mean that it is smooth sailing ahead of us, but it has never been smooth sailing before. And we’d probably be bored out of our minds if it were any other way. Okay, in truth, we have a long, hard road ahead. But it just doesn’t feel like a “crisis” anymore. My point, then, is that I am going to pull back on the frequency of these emails. If there is big news, I will make sure it gets to all of you. But for now, assuming things stay mostly where they are, the updates will no longer be nightly. Thank you, thank you for sharing this journey with us. We needed your support, and you were there. We’ll never forget it.
I will also give you an update on Mads’s PPH clothing project in the future. Amazing things are happening, much of it has already happened, much is still in the works. I’ll send that along (because I know that many of you are active participants) once the story is complete. It’s a good one–thanks in large part to YOU.
Love you so much. You truly are the sweetest of tacos. xoxox

Day Tripper

Dearests,

Well, I do apologize for my cliffhanger last night. It did not make me very popular! It was, alas, necessary, as I was equally cliff-hung myself. You see, yesterday evening I got a phone call from Isaac’s new day treatment/partial hospitalization facility, to say that our insurance had not yet approved this transfer. Oh, I wasn’t happy. PPH had sent him home, but Day Treatment (DT here on out) couldn’t take him yet. Ugh! While we were assured that our insurance would almost certainly approve it, they strongly suggested we wait until all of the t’s had been crossed and the i’s had been dotted.
Well, the approval did come in this morning, so they moved our intake meeting from its originally scheduled 9:00 a.m. to noon. Not nearly as scary as it could have been. No big deal at all, really. Ahhh, isn’t it awesome when things don’t turn out to be any big deal?
The intake meeting went really well. After dealing with administrators, the therapist we worked with closed the door, looked at the massive pile of paperwork that I mostly hadn’t even had a chance to fill out yet (having received literally 75 pages just an hour before…) and quietly informed me that she didn’t see any reason for me to finish filling it out, because she thought it was basically useless where Isaac was concerned.
Oh my gosh, I loved her already.
So she set the useless paperwork aside and we talked. And we talked and talked and talked. She took pages and pages of notes. She wasn’t condescending–she remarked several times that I clearly already knew the lingo and was already implementing (and had been for years) the things she would suggest to parents who were newer to all of this. She respected me as the expert on Isaac and was impressed with how much we’d already done on his behalf. Not in a flattering way, but in a way that showed she understood we weren’t novices. It was such relief to meet someone like this! On top of all of that, she seemed determined to be helpful. And I think if anyone can be helpful at this point, she’s the one.
While I was in with the doctor, talking-talking-talking, Isaac was off getting a tour of the facility and joining in with the various groups. A normal day at DT will go from 8:30 a.m. to 3:00 p.m. Monday thru Friday. So basically the same as school. This is a bit less support than what I thought we were signing up for. I guess we’ll have to wait and see how this works out. I’ll leave it at that, because I’m trying to be optimistic…
Isaac had a great time at DT. He was excited to be there and seemed really happy. And then he came home and did pretty well at home too. He even got to go visit some people and had a great time. I would call it overall a good day.
Imagine our surprise, then, when this evening he suddenly melted into heartbreaking and unrelenting sobs. He garbled out something about hating DT and not ever wanting to go back. Well, I don’t think he hates DT. I saw him there and he was happy. Sometimes with Isaac, the emotional storm comes first and then he subconsciously searches for and comes up with the reason for the emotion after the emotion has already hit. So the reason he gives for the emotion often has nothing to do with the emotion at all. The emotion just happened all by itself. I don’t know if that makes any sense… Anyway, I suspect that this is what was happening tonight. But the sobbing. Oh, the sobbing. So gut-wrenching. He just started and couldn’t stop. It took a very long time to calm down and then it was time for bed (after a couple of rounds of Connect 4 with Nugget, of course).
I just wish I had a better idea of how to help him when these awful emotions crash all around him. He feels totally helpless and I feel totally helpless right alongside him. Poor little guy.
I really hope the meds he’s on (including the “mood stabilizer” which, uh, will hopefully stabilize his mood…) will help with this, because it doesn’t appear that anything else (therapy, dialogue, hugs, all the love in the world) can touch it.
But, again, if I had to classify the day, I would say that it has been a good one, despite the unfortunate ending. Plus, the facility he’ll be spending his days at seemed good and the doctor I spent the day with was great. Tomorrow will be his first real day there. Crossing our fingers that it meets his needs!
Love to all. xoxoxox

A Clean Start

Sweetest tacos,

Holy cow, guys. This is a long one. Bear with me (or, if the suspense is killing you, feel free to skip to the end. Haha).

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

On the Eve of News

Hello again, sweet tacos!

Today was a weird day, because it was the first day since Isaac went to the hospital that I didn’t actually see him. I was busy taking my oldest two kids down to Provo for EFY where they will stay for the week (and I was busy getting them packed… and shopped for… and of course Mads had an audition along the way… you know… like one does…). And then tonight Nugget had his show in the opposite direction with an early call time, etc. So while the older kids are often asked to sacrifice me for Isaac’s sake, today Isaac sacrificed a visit from me for their sake.

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

Sweet Tacos

Dear Sweet Tacos,

“Sweet tacos” is a phrase that Isaac coined one day, a couple of years ago. I was dropping the older kids off at school and as they got out of the car, he yelled, “Goodbye, Sweet Tacos!!!” He said it with all the love and devotion his little soul could muster. It has been a family favorite ever since. You see, tacos are one of the dearest food items in the world to our little Isaac. And if you can call people things like “sweetie pie” or “pumpkin” or even “honey,” surely you can call them “sweet tacos,” but only if you really, REALLY love them.
So, welcome to the sweet taco club!
As you know, Hubby and I have 3 other children. They are totally sweet tacos. We are a package deal, of course, and when one of us is going through something, all six of us are going through something. So while Hubby and I are feeling the refiner’s fire, so are Mada, Bud, and Nugget. They are already really great kids, but I feel like this experience is making them even better. (These kids aren’t perfect. I know that, they know that, you probably know that too. The following descriptions, though, are meant to focus on the positive and highlight their inner gold which, to me, shines brighter than ever right now.)
Nugget, age 12, is our resident thespian. Both of his older siblings (and his mama, wayyy back in the day) have also dabbled in theater, but Nugget lives and breathes it, and despite his youth, his resume is already quite impressive. Recently he became aware of a local theater that raises funds and provides support for people and their families who are battling cancer. He auditioned and landed the role of Benjamin, the youngest brother, in their production of Joseph and the Amazing Technicolor Dreamcoat. His heart was already in the right place, and the idea of donating his time and talent to a worthy cause meant a lot to him. But suddenly, in the middle of rehearsals for all of this, his own family faced crisis. Now, our crisis is different, but Nugget has learned in a big way that when a person is battling cancer, their whole family is battling cancer (or whatever their crisis may be) together. The compassion and empathy and tenderness of his already-good heart have grown immeasurably. He feels what they feel in a way he never was able to before.
Bud, age 14, is our resident activist. He is our sturdy, steady guy who feels things very deeply. He is so helpful and dependable that I probably err on the side of asking too much of him, but he never complains. He may feel Isaac’s absence more than anyone, because 95% of the babysitting-of-Isaac is done by Bud. And as our situation here at home went from extremely difficult to full-blown crisis, Bud was my rock and my muscle. Early one morning, I even pulled him out of bed and asked him to run all over the neighborhood to find Isaac and bring him home. Never a moment’s hesitation, never a moment of complaint. Bud belongs to his school’s Hope Squad, which is a club run by the school’s counselors. This group of students is trained to help their peers who may struggle with depression and/or suicidal tendencies. They learn to friend the friendless. They learn to spot the signs of someone in trouble. They learn how to stamp out bullying, cyber or otherwise. This is a cause very near and dear to Bud’s heart and I’m so proud of his determination to change the world for the better. Bud has had a number of important experiences while Isaac has been in the hospital. They are sacred and personal for Bud, so I will leave it at that, but this boy with the heart of gold is turning into a totally dependable man with huge plans.
Mads, age 15, is our resident medic. She dreams of an Ivy League education and a medical degree and traveling with Doctors Without Borders. She herself is still battling her own medical drama after an accident that left her with a traumatic brain injury 2.5 years ago. The brain injury left her with migraine-level headaches, every moment of every day, including the nausea and brain-fog that goes along with migraines. She smiles anyway. She helps anyway. She works anyway. I think perhaps what Mads has learned most keenly through this experience with Isaac is something along the lines of, “if you build it, they will come.” She became aware, as I’ve already discussed at length, that there are children who lack the very basics at the PPH. Shoes. Underwear. Clothing. It hurt her to her very core and she said, “We have to do something about this.” Then she said to the internet (and to all of you), “Will you help me do something about this?” And your answer was a resounding YES. And then, along with the clothing and money donations, love came pouring in. Everything that has been donated to this clothing drive–hundreds of dollars and thousands of items–was donated with the same love she felt when she asked for your help. And lives are being changed. Sad, tender, fragile lives are being changed. Because love can do that.
“When thru fiery trials thy pathway shall lie, my Grace, all sufficient, shall be thy supply. The flame shall not hurt thee; I only design thy dross to consume and thy gold to refine.”
We miss Isaac. We miss him desperately. But we also know that Isaac is where he needs to be. For some reason, this experience with the PPH is something Isaac needed to go through. But that means that I needed to go through it too. And so did Hubby. And so did Mads and Bud and Nugget. Because, as I say, we are a package deal. I see the way it’s bringing all six of us closer together. I see the way it’s turning my children into better, stronger people. Their dross is being consumed, their gold is being refined. His Grace IS sufficient. And we’re learning that even when things are hard, there is so very much to be grateful for.
And YOU, all of you, top that list. You are, in fact, the sweetest of tacos!

A shared understanding

Dearest darlingests,

Today is Saturday, which means Family Group Therapy at the PPH. Our whole family was able to go together, for once! There was another family there this week. It was their first time because their son is new to the PPH. They seemed like very sweet people. Good parents, cute children, but I could see that shell-shocked look, especially in the mother’s eyes. Whatever brought their son there was not a happy story, of course. I don’t know him at all, but I do know that you only land yourself in the PPH if something very dramatic has happened. I saw in that mother all of the love and fear, the hope and pain. She and I shared a few moments of total understanding. I don’t know her, I don’t know her husband, I don’t know her other children, and I don’t know her son at the PPH (though they all seemed like great people). But oh my golly, do we get each other. We shared smiles and nods and a sense of solidarity. At the end of therapy as we were leaving, she wished me “good luck” and I returned the sentiment. And then we both sorta sighed and half-laughed and nodded our understanding. I hope it helped her to know that she’s not alone; it helped me.
(Not that any of you have ever let me feel alone! You have all been such an amazing support through all of this. Your notes and kind words and prayers and everything else are so very appreciated.)
Isaac had a pretty good day, from what I could tell. He was mostly pleasant and engaged. He was, of course, determined to lick the green paint during our artsy-craftsy therapy session, but only because he had been specifically told NOT to lick it. But he was happy and playful and mostly did a good job. Once again, our therapy session had a “moral of the story” sort of lesson to go along with it, and, once again, Isaac completely missed it. Haha. But, really, who knows what bits and pieces might be sinking in, taking root where none of us can see them. I guess that’s why we keep trying, right?
Well, that’s all for tonight. Thanks, as always, for everything. xoxox

Unpredictable…in every way!

Dearests,

Our day started with a meeting with me, Hubby, the psychologist, and the psychiatrist up at the PPH. Our main topic of conversation was the fact that Isaac is totally…unpredictable. Which I guess is what the last few emails have been about, so it’s not really news. Hubby shared his experience from yesterday when he and Isaac had the best visit ever until it turned into the worst visit ever. I talked about the sobbing visit from the day before which suddenly ended in aggression and time-out, and the doctors shared similar experiences from their visits and the staff charts. They also talked about how sometimes one of them will visit and find him calm and collected and clear, and the other will visit an hour later and find him the exact opposite, with no apparent triggers.
(Whenever I have to fill out paperwork about Isaac, I’m always asked what his triggers are. I’m like… uh… nothing? Everything? I’ve wondered if maybe I’m just not very observant. As it turns out, we all agree that his triggers are…well… both nothing and everything.)
Sometimes Isaac responds to a sedative the way the rest of us would. Other times he has the extreme opposite reaction–hyper and crazy and bouncing off the walls.
Or he can be on a mood stabilizer and all the signs from his blood work show that it’s working but his mood can be All. Over. The. Place.
In short, unpredictable.
The good news is that Isaac appears to be tolerating all of his meds well right now. Now, whether they are doing ANY good of ANY kind remains to be seen.
What do you do with a child who is so totally unpredictable? How do you know when he’s stable enough to go back to normal life? What IS normal life?
Well, we have a plan. It’s a pretty good plan, I guess. One that all four of us agree on. The plan is that hopefully on Tuesday, things will line up in such a way that he can be discharged from the PPH and on Wednesday, he will be checked into partial hospitalization. If partial hospitalization fails (or isn’t sufficient), he will be sent back to the PPH or placed in a long-term residential facility. Of course, we’re all hoping that partial hospitalization works and that soon he can be downgraded to weekly outpatient visits while attending his regular school.
But it all hinges on all of these unpredictable things. So… who knows?
In the meantime, entertain yourselves with this little gem:

After our meeting with the doctors, we went back to Isaac’s room. Hubby had brought his trusty box of Connect Four and the two of them got right into it. I took a bunch of pictures and Google Photos strung them all together in this delightful animation. They had a great time and Isaac won fair and square.

Oh my golly, I love this human (both of them, actually).
And I love all of you! Thanks, as always, for being such a solid base in our unpredictable world!
xoxox

A very clean face

Howdy there partners,

When Isaac got to the PPH, we were told that it’s very rare for people to stay at the PPH for more than 2 weeks. It’s like an ICU, you see, that is set up to treat acute and urgent needs. Once the patient is ready to leave, they’re not “well,” they’re just out of immediate danger.
Well, today marks 2 weeks and 1 day since Isaac arrived, and the current earliest expected check-out date is Aug. 8, which will be one day shy of 3 weeks.
Is he just so much more severe than other children? Is he just so much more dangerous? I don’t think so. He’s just so much more…complicated. As his psychologist so kindly put it, he has a “rare brain.” You just never see all these things at once. And that’s just the things we know about. This rare brain has so many unknowns still.
And just when you think, no, this child isn’t dangerous, he proves you wrong. He hurts himself, he hurts someone else, he’s unable to control those impulses. He has not graduated from “immediate danger.”
Well, actually, we had a pretty good day with Isaac. Hubby and I visited him together this morning and it went just fine. Then Hubby visited him tonight and they had the best time ever. They played games and they talked and it was, according to Hubby, the best visit and the most fun they’ve had since Isaac got to the PPH. Hubby stayed for a looong time, much longer than we usually do, because Isaac just kept asking if they could play another round of Connect Four and keep talking. Obviously, Hubby wasn’t going to say no! They had the best time and Isaac has never seemed healthier. Until… right at the end of the visit, out in the hallway as they were saying goodbye, Isaac lashed out and got in major trouble with the staff and just seemed to have a complete personality shift. Screaming, yelling, over-the-top silliness. I don’t know all the details of the meltdown, but I do know that it involved pouring hand sanitizer all over the floor and then when being told to clean it up he got onto the floor and rolled his face in it and slurped it up. You know, like you do.
(I can’t begin to understand. But I do suspect that there is a rule that hand sanitizer–which is only kept in public areas like the nurse’s station–can’t go on or near your face, or something like that, especially in a psych ward where they have to keep kids from drinking the stuff. So I suspect it was an act of outright rebellion to spill it and then stick his face in it until he got it everywhere.)
Anyway. One step forward, one step back, zero answers. Isaac did start his new antipsychotic today. Maybe something exciting will happen in the next few days. Or maybe he’ll set a goal to get hand sanitizer ear to ear and the new meds will just give him the gumption to meet that goal at whatever cost. Who knows?
But when it comes to safety, I think it’s fair to say that, no, he’s not safe. Because he’s not stable. Because he can’t control his impulses. Because even in his sanitary, structured, supervised, safe haven, he still manages to hurt himself or others. And it’s so sad, because I know him. I know that really, truly, he is the sweetest boy on the planet. May they figure out how to bring that boy home to us. But for now, he’s where he needs to be.
Well, clearly the last few days have been weirdly rough. Thanks for your ongoing prayers and kindness. We feel it. We really do. How would we ever make it through without you?
xoxox

Rollin’ and Coastin’

Dear Fabulosos,

Ah, the tangled dips and turns and twists of the Isaac Roller Coaster!
Mads and I arrived at the PPH in the very moment that Isaac was receiving a sedative.
Maybe that’s all I really need to write tonight? It kinda sums it all up…
Once he’d swallowed his sedative, the three of us headed back to his room where he cried and cried and cried. He sat on my lap and let me wrap my arms around him and he just kept crying. He was completely heartbroken. Eventually, when my time was up, I got him to lie down in his bed and I tucked the blankets all around him and told him just to stay there and get some rest. As Mads and I slipped out, he decided he wanted to say a real goodbye out in the hallway. He came running after us, startling the nurses who called after him to stop (he was still sobbing–that never let up). The whole staff looked ready to pounce on him. The person apparently in charge of his behavior chart for the moment demanded to know from me how our visit had gone (since Isaac had been out of control enough to need a sedative before we showed up and then appeared very unstable still as we were leaving). I carefully explained that Isaac was very upset, but he hadn’t done anything wrong and I felt like he just needed some rest now to let the sedative help him out.
ALL OF A SUDDEN, Isaac screams angrily and lurches at me, pinching my hand hard enough that he scraped a chunk of skin off my palm. I was so surprised that I held my hand up in shock as they hauled Isaac away from me and off to the now infamous time-out room. Mads and I called out to him that we loved him, but they wouldn’t let him get close enough to us for us to hug him goodbye. As we left, I could only imagine how awful time-out was. He was already in such terrible emotional shape. Sigh. I so wish he had just stayed all snug in his bed waiting for the sedative to kick in. Ugh.
A little while later, the social worker called me. She was calling to talk about Isaac’s upcoming transition into partial hospitalization, but she asked how today’s visit had gone. I briefly told her about it, but said, “you know, we understand, with the new meds and everything. This is just part of what we expect.”
“He’s not on a new med.”
*Cue scratching record sound.*
“What do you mean? I thought they’d started the new antipsychotic!”
The social worker went through her paperwork and said, “No, I do not show that he has started that yet. I’ll have the psychiatrist call you.”
Holy cow. All these things I’ve been chalking up to a new med, and apparently there is no new med.
The psychiatrist called me right away. She started off by asking how our visits have been going and I told her about how yesterday was difficult but today was heartbreaking. I told her about how they were sedating him as I arrived (which they hadn’t told her yet) and that he sobbed hysterically through our whole visit and then lashed out and hurt me. I told her I assumed it was because of the new antipsychotic–which she confirmed had not been started yet. She told me that they weren’t planning to start the antipsychotic for a couple more days as they wanted to increase the mood stabilizer just a little more. She was very concerned about my reports of how these last couple of days had gone–she had seen him this morning, but it was before he’d started to struggle for the day, so she didn’t know. Obviously this means that there are new concerns about the mood stabilizer (since there is approximately zero mood stability) and more urgency to get him going on some form of antipsychotic rather than wait any longer. So… there we are.
Are we all more confused than ever?
Hubby visited Isaac tonight on his way home from work. It went equally but differently bad. He just spent the whole time insulting Hubby and trying to get him to go away, which, after about half an hour, he did.
And there we have it, folks. Dips, turns, twists. What will tomorrow hold?
All our love,
Mama Annie