anxietyfearparentingrageschizoaffectiveschizophrenia

Drowning

Chrisa Hickey1 comment

It’s been an interesting weekend, to say the least. Definitely not relaxing. I don’t know how I feel about it, really. The fact that it’s 5 o’clock Sunday morning and I’ve been up nearly 2 hours after waking during a dream that I was drowning probably says more about how I feel than I could put into words.

Tom picked up Tim about 2:30 in the afternoon on Friday. He said he was surprised that he was going with us for the weekend – surprised, after his case worker talked to him about it twice this week, and we talked about it on the phone every night for 6 nights. He was his usual non-stop talkative self the entire 3 hour drive from the residential care facility to our cottage in Wisconsin. He called me on the phone – I was driving up separately after work Friday – before he went to bed, anxious for me to arrive.

We love this weekend in Door County – Fall Festival has always been fun, with a Kiwanis pancake breakfast, parade, art fair, and a friend who throws a fun party for us all, complete with a bagpipe club from Milwaukee that comes up for the parade, but plays for us at the party too. Tim has always loved parades – probably all the constant and changing movement and noise – so we figured this was a good time to take him for a weekend.

Well, Saturday started out like a typical Saturday. At 8 o’clock I went upstairs to wake the kids for the pancake breakfast. Tim was a little hard to wake, but that is not unusual. He seemed excited for the day’s events, showered, and got dressed. So did the rest of us. So far, so good.
We got to the pancake breakfast – it was more crowded than I expected, but Tim did fine standing in line, waiting his turn for pancakes flipped slowly and meticulously by the Kiwanis. He sat and ate his pancakes and sausage with out fuss or muss. There was an hour between the time we finished breakfast and when the parade would start, so we decided to walk down the street past the local businesses and food booths. It was chilly, so when we went into one store that had a stocking cap that matched Tim’s jacket, Tom bought it for him. He seemed happy and content at watching all the people walk by.

Then the tide turned. We headed over to the art fair – a bunch of tents with local artists showing and selling photos to jewelry and the like. And he froze. Just stopped dead in his tracks. He was tired – he wanted a nap…then the coma face. We’d lost him. When Tom tried to talk to him, he sat on a bench, staring, mouth agape, gone. When I tried 10 minutes later, he started yelling at me, snapped up and took off down the street, through the crowd. Tom wanted to chase after him immediately. I stood frozen to my spot, cold chills running down my spine. It was just as I’d feared. We can’t control the demons in his head. We can’t make it through a day without screaming or flying objects or fleeing. He got a quarter mile ahead of us before I could get myself moving after him. He was sitting on the back of the car when we caught up, and that was it – the morning was over before 10:30 am.

We came back to the cottage and he went straight to his room and slept. Tim has always slept as a way to avoid everything – the voices, the anger, depression, schoolwork, us. He slept for nearly 3 hours, just three hours after waking from over 10 hours of overnight sleep. I sat numb, chills continuing, wondering if we shouldn’t just pack and head for home, dropping him back at the RTC on the way. Tom was convinced things would improve once he woke. He was in a better mood after waking, even apologizing for making us miss the parade. But we still had the party to get through later in the day. I was sure I’d be home keeping Tim occupied so Tom and our daughter didn’t have to miss another weekend event.

When 4 o’clock rolled around, Tim was sure he wanted to go. He likes our friend very much, and that friend had been alerted to the morning’s issues, and was very nice in helping us devise a plan in case one of us had to leave immediately with Tim, abandoning the rest of the family there. Upon seeing the sea of adults on the lawn when we arrived, Tim was immediately restless, pacing around the yard on the perimeter of the guests. He asked and was granted permission to take a walk down the road. I tensed up. A few other friends showed up with their children ages 8 and 3, and Tim, his sister, and the boys went to play in the yard, out of immediate eyesight of us. This, naturally, made the hairs on the back of my neck stand up. I would jump at every minute sound, every perceived return of “coma boy,” or his equally feared twin, “the rager.” We made it nearly 3 1/2 hours at the party – Tim ate a burger, chewed ice, ran around the house, talked to every adult there, and followed a rambunctious 3 year old around for an hour. I stood in the yard, tense, hypervigilant, nervous, waiting for the other shoe to drop.

It didn’t drop – but the weekend isn’t over yet. We still have to make it through Sunday without drowning.

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anxietyrageschizoaffectiveschizophrenia

Ch..Ch…Changes

Chrisa Hickey2 comments

A lot has changed around here in the past couple of weeks. I’ve gone back to work in an office, after working from home for nearly 3 years. Our daughter has gone from thinking we suck, to wanting to hang out with us, to thinking we suck again (she’s 14). It went from 79 and sunny to 34 and cloudy seemingly overnight. And the rose is off the bloom for Tim at his RTC.

Yes, the honeymoon is officially over. In the past two weeks his guard has come down, and he’s moved on to all of his anxiety avoidance techniques. Sleeping late. Excessive bed wetting. Rage in class and at transitions. They called me yesterday to ask about his alternating sleeping in class and raging against staff. I didn’t know what to tell them – school is a huge stressor for Tim because it’s always been difficult. He’s had a one-on-one aid since the second grade, but they are trying to forego this now. He’s always been able to bond with his aide and the aide has helped keep him on task and redirect him when the anxiety gets high. Without one, the teacher is left to abandon the rest of the class to try and keep Tim on an even keel. It’s going to be a battle, for sure.

Contributing to this is his level of homesickness. He’s called nearly every night this week, asking sweetly when we were coming to visit, or when he could come home. It breaks my heart to hear him this way. Tom will be visiting him on Monday, and we are going to take him with us to Wisconsin for the weekend next week. I’m scared to death, though. Will he be able to be back in the family routine for just a weekend? Will it be two days of quelling the demons and sitting on him to hamper rage? Will we be able to get him to go back without inducing a week of anxiety afterwards?

I hate that I can’t fully look forward to seeing my son. There has got to be something wrong with my psyche or brain chemistry or something. What mother in her right mind is afraid to spend time with her 15 year old son?

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Thanks but….

Chrisa Hickey13 comments

I get a lot of unsolicited advice on dealing with Tim.

Most of it is meant with good intentions, I know that. Rarely do I get comments from buttinskis that mean their advice more to admonish my parenting than truly be helpful. Those are usually the people that have no freakin’ idea what we’re dealing with. I don’t get those anymore – mostly because, a few years ago, we stopped going out in public with Tim if he was unstable.

I get the good intentioned kind all over the place. My mother-in-law, bless her heart, truly means to be helpful when she comes to visit and, after being here for about a day, starts every fourth sentence with, “Maybe if you tried….”. I know she means well, and I know she does it out of love and a desire to be truly helpful, but it makes the hair on the back of my neck stand up.

Neighbors and friends sometimes offer ideas as well. I know that when these tips come, they come out of a place of support and sympathy.

I get comments here on the blog and emails from readers about alternative medicines and therapies, “new age” type stuff from all corners of the ether about cures, misdiagnoses, supplements, and how I’m “poisoning” my child with antipsychotic medication. Again, all come to me with a tone of support and desire to be helpful.

Please know – I appreciate anyone who takes the time to send me an idea, an article, advice, or something else to try. But just for the record, let me run down all of the techniques, medications, supplements, diets, and therapies we’ve tried to date:

Medications:

  • Ritalin (that was a wild ride)
  • Abilify
  • Risperdal
  • Depakote
  • Seroquel (regular and XR)
  • Lithium
  • Geodon
  • Lamictal
  • Tegretol
  • Invega
  • Haldol
  • Thorazine (which is still used for severely violent psychotic episodes only)
  • Ativan
  • Topamax
  • Trileptal
  • Clozaril

Supplements / Vitamins

  • Vitamin E
  • Vitamin B6
  • Vitamin B complex
  • Fish Oil
  • Vitamin B12

Therapies

  • Cognitive Behavioral Therapy
  • Talk Therapy
  • Play Therapy
  • Occupational Therapy (for sensory integration issues)
  • Speech Therapy
  • Sensory Integration Therapy
  • Points Systems
  • Risk/Reward Technique
  • Positive Parenting Technique

…That’s the bulk of it, but not the entire list. We haven’t tried each one individually, either. We’ve mixed, matched, taken out what hasn’t worked, added others. Right now, Tim is on a combination of Clozaril, Vitamin E, talk therapy, speech therapy, occupational therapy and point system.

I sometimes react badly when people try to give me unsolicited advice. Let me first say, I’m sorry. I don’t mean to seem ungrateful or annoyed by your attempt to be truly helpful. But please remember this – I belong to several different organizations dealing with children’s mental health, I belong to two support groups, I’ve read every book ever published, nearly every theory posted to the internet, and we’ve tried what sounds like it may have promise and discarded what sounds hokey. We have more than four doctors on “staff” and we’ve gone through more than a dozen others in three states. We’ve had more consulations and evaluations than I can count. It’s highly unlikely that what you will suggest we haven’t researched and either implemented or discarded.

My kid is on meds. Very heavy duty, atypical anti-psychotic medication. A medication with FIVE black box warnings from the FDA. And, right now, it keeps him from alternately trying to kill us or himself. Nothing else has.

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Relief

Chrisa Hickey16 comments

When we talked to Tim on the phone last Thursday, he seemed to be a bit homesick. “When are you coming?” he asked. This is a big change from when he was inpatient. He used to love to play the punishment game with us every time he was in the hospital. The first 2-4 days, he’d call us just to hang up on us mid-sentence, as if to say, “I have the upper hand, and I’m going to show you how mad I am you put me here.” Then he’d refuse to see us when we came to visit, because he knew he didn’t have to come out of his room to see us, even if we were there in the flesh. This would degrade into being willing to see us, but only to play Uno or some board game – no conversation was allowed, or he’d bolt out of the visiting room. Finally, when he’d had enough of being in the hospital, he was willing to talk to us about what he’d been doing, how he was feeling, and his desire to come home.

The longest he ever went inpatient was 38 days straight. He’s been in residential treatment for 26 days today, and it’s already sinking in that this is more permanent than the hospital ever had been. So we made the drive up to see him yesterday, and decided to take him off-campus for a few hours, to cruise through Target – his favorite place in the world – and to lunch. We were nervous that we’d get him off campus and he’s start to ask to go home. I knew I couldn’t take it if that happened.

But it went well – he looks great. His face if nearly free of acne – the first time since he hit puberty – he was clean, dressed well, and he’s lost nearly 10 pounds. And he seems happy – he talked about the kids on his floor, the staff, and his teachers. He seems to get along with everyone except one kid on his floor (the staff had told us the two of them have short fuses at times and can get on each other’s nerves). The voices are at bay at the moment, he said, and he was very definitive at lunch that he should have a salad, not a burger, because he was learning to eat better to lose more weight and feel better. I nearly spit diet soda across the table when he said that. He didn’t even finish his salad, saying he was full.

He kissed me goodbye when we dropped him off, a few hours after we’d collected him, smile on his face. And I’m encouraged. I have been carrying such guilt since we made the decision to put him residential and, for the first time, I felt that we made the right choice. He sounds happy. He looks healthy. His days are highly structured and he has professional support 24/7. I still have a little dread about how his first home visit will go – I’m afraid he’ll just regress back into his bad habits – but I feel, for the first time, this was the right decision.

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Cycling

Chrisa Hickey3 comments

Talked to Tim on the phone last night. “My voices are back,” he said. As he’s gotten older, he has started to get the ability to separate his own thoughts from the three voices he shares his head with, at least for a time. After secretly congratulating myself for warning his case manager that this cycle was coming, I asked if he’d talked to his case manager about it. He assured me he did, but I’ll be calling him today to be sure. Tim can decompensate fast.

I seem to be cycling too. No sleep last night. I think it was a combination of these strange restless leg symptoms that have snuck up on me over the past several months and Tom’s snoring, which usually doesn’t bother me, but is completely impossible for me to sleep through when sleep is hard to come. I seem to have a sleepless few days about the middle of every month for the past several months, and I need to find a way to nip this cycle in the bud. I’m actually glad cooler weather is coming. I always sleep better when it’s a little cool out.

We’re going up to visit Tim this weekend. The plan is, so far, to take him out to dinner, but it all depends on how he’s dealing with this cycle. I always hate this point of his cycle – not the mania and voices per se, but the depression that I know is to follow. I feel so helpless when he sleeps, mopes, and is generally down on himself and life. We’re lucky in that his lows aren’t anywhere near as low as his highs are high. I don’t know how parents of kids with a deep depression cycle handle it. I definitely deal with the chaos better than dispair.

Tim’s three voices seem to cycle in his head, too. He almost always gets his friendly, “little girl” first. She’s more of a playmate and confidante, from what he’s described. After that comes the voice similar to his own – this one can alternately put him down or support him. I haven’t quite pinned down how this one impacts him yet. The third voices is the one that frightens me. It’s the one that tells him he’s in danger, that everyone is out to get him, that he is useless and can’t do anything right. Tim calls it “the screamer” because it will often just be a loud scream in his head. It frightens him. I’m pretty sure that Tim could deal with just having “little girl” and the second voice, if we could just get rid of “the screamer”. I can’t even imagine how terrifying that must be.

I hope we get there this weekend before “the screamer” does. Tim’s been a bit homesick, and there’s no comforting him when “the screamer” is in residence.

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parentingrageschizoaffectiveschizophrenia

Dealing With Rage

Chrisa Hickey12 comments

(Note: This was a comment I left on http://www.januaryfirst.org/ – The Milk Keeps Spilling.)

We learned to perform what’s called a “therapeutic hold” to keep our son from hurting us or others or himself. It’s sort of like a wrestling maneuver, but will restrain someone so that they are immobile but not in pain. It worked well when Tim was 10. Not so much at 15, 6 feet tall, 205 lbs. It takes at least two of us to do it when he’s in full-blown rage at this size.

The violence of his rages was the primary driver to our decision for residential treatment. We’d had to have police intervention to assist us (and, luckily, we have a very understanding police force in our town that knows Tim and his history) to help us get him to the hospital on at least three occasions. We learned this the hard way, after suffering cuts, bruises, sprains, and, in my husband’s case, a chipped elbow bone after bearing the brunt of a violent rage.

What we parents of severely mentally ill children understand, but is hard for those witnessing it to get, is that the rage is not usually an attempt to actually hurt someone else, but an expression of anxiety, frustration, and plain sick-of-feeling-this-way-ness. Imagine how much frustration and anxiety my son must feel when he can continue to rage with 400 mg of Thorazine on board. That would bring down a large-sized adult male.

But it’s difficult to live with. We have a safety plan with our other two kids (both in their teens), where they are allowed to leave the house and go to either a designated neighbor or to the public library when Tim rages out of control, without asking before they leave. Once we have the situation under control, we know they are at one of those two places and can give them the “all clear” signal. It’s a horrible way to live, and our daughter is showing marked signs of PTSD from it. Another big reason for residential treatment for Tim.

Even through all this, Tim’s siblings don’t dislike him. Our daughter expressed to her therapist that she is both happy and sad that Tim is in residential. Happy because she knows she is safe and doesn’t have to withstand the delusional and bizarre behavior that comes with his instability, but sad because she and Tim, when Tim has periods of stability, are close confidants and excellent playmates. I was glad to hear that she, even at 14, can separate the illness from the brother. It’s incredibly insightful for anyone, let alone a young teen.

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First Visit

Chrisa Hickey2 comments

So – Tim’s been in RTC for two weeks now. We saw him twice over the holiday weekend, for about an hour on Friday, and about 15 minutes yesterday. Friday was a good visit – he told us about his “friends,” was happy to say he got the posters I sent him for his room (one of Superman, his hero, and one of the Green Bay Packers), and showed us how he was keeping his room clean, which has been a huge issue for us. I was sorry to see that he’s gotten out of the habit that I worked on with him very hard – looking at the person he’s talking to – but I didnt’ make an issue of it. He started school, but they are mostly testing him to determine the best classes to place him in, and they have him switching classrooms for his subjects, which he handled well the first week, but I fear that won’t last. We’ll see. He acted very “grown up” but did want us to stay for hours, or go out with us. I’m glad we took their advice and didn’t take him off campus. I don’t know if we’d have been able to get him to go back. He didn’t verbalize it, but it has seemed to sink in that this is different than inpatient hospitalization – there is no twice a day calls, no five times a week visits, no end in sight to his stay. His case manager had told us that he’s shown some agitation with a few of the residents on his floor, but I expect that to get worse before it gets better. It was hard for me after we left, particularly because he wanted us to stay, but I managed to hold it together.

Yesterday we stopped in to bring him a few things he asked for on Friday – a new electric razor (the other was on its last legs when we sent it with him), headphones for his music with a really long cord so he can listen to his stereo – which is on his dresser – while lying on his bed, some tempra paints, and composition books, which he goes through faster than underwear. But the visit was very different. He was all energy – high motion, rapid fire speech. He didn’t want us to stay this time, another sign of high agitation. This type of behavior is usually a warning sign for us that mania is on the upswing, and psychosis is usually on the backside of it, so I’ll be emailing his case manager this morning just to give him a warning to keep an eye out, and let us know. I’m also going to email because he said on Saturdays they watch a video, and this past Saturday is was The Shootist – R rated, and violent. NOT a good choice for a bunch of kids with rage issues!! Tim said he didn’t watch all of it because he got tired and went to bed, but still, not a good choice, especially if he’s heading manic. I’ll be interested to know if his sleeping habits are starting to change at all.

I have a hard time every time we talk on the phone or visit Tim. The permanency of him being gone is making me more emotional than I thought I would be. Tom is more stoic. I don’t know if it’s just him keeping a stiff upper lip, or just the numbness of it all, after all that we’ve been through. You’d think after 19 years of marriage I’d know. But, looking back, we are both more stoic. I remember the first time we had to put him in the hospital. We didn’t sleep for two days, and we both wept. The last several times, we practically flipped a coin to see who would go to the hospital with him and go through the paperwork, and who’d get to stay home. It was just a normal part of the cycle of our lives, as sick and sad as that sounds.

We have yet to tackle the smelly, stained, disheveled mess that is Tim’s bedroom at home. We just shut the door and left it, intending to not address it for the first few days. Now two weeks have gone by. It’s pretty bad – we have holes to fix, the carpet will probably need to be replaced, and there’s an odor we hope won’t linger after wiping every surface down with antibacterial cleaner. If I think about it, I have to say it’s probably a combination of not wanting to tackle the disgustingness, knowing he’ll come home for visits starting next month and not wanting to have to redo the cleanup after every stay, and the permanence of what his room clean and staying that way means. Maybe I’m reading too much into it.

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mental illnessparentingresidentialschizoaffectiveschizophreniaschool

One Week

Chrisa Hickey2 comments

A week has gone by since we checked Tim into ODTC for residential treatment. We’ve talked to him on the phone three times, and all three times were pretty much the same: he’s fine, so far everything is good, when are we coming to visit. I think he’s realized that, unlike when he was hospitalized, he really is pretty much on his own, the master of his own destiny, that destiny being his growth to learn how to cope with his symptoms and deal with the irritations and anxieties of day-to-day life. We won’t be there on the phone twice a day, visting four days a week.

He’s 15 years old and too “cool” for kid stuff (he said when we packed his things to go), but he was pretty happy to get the things I sent him this week – a stuffed sock monkey and a poster of Superman. I’m glad that he’s not trying to fit in so hard that he’s not afraid to be himself, and tell me on the phone, in the common area where others can hear him, that he likes the sock monkey. It reminds me that my boy is in there, under the neuroses and psychosis, somewhere.

Life at home has been quiet. No need to lock any doors or cabinets or the refrigerator. Didn’t even have to grocery shop this week. But I still feel myself checking rooms, checking doors, and otherwise being as hyper-vigilant. It’s a habit, and it seems not as easy to turn off as I thought it would be. A quiet house is still cause for alarm in my head.

Tim’s never been a big phone conversationalist, even though he enjoys calling and being called very much. I don’t think I’ve ever had a phone conversation with Tim that’s lasted longer than three minutes. I hate that – I want to be able to talk to him about his day, how he likes his new teachers, and how he’s getting along with his classmates and dorm mates, but he’s so immersed in what’s going on in front of him at any given time that he can’t even say hi to me and that class is fine without asking me to hold on while he holds another conversation with the person in front of him. I know he likes us to call, but I really think it’s to make sure we’re still here and haven’t forgotten about him, more than actually talking and relating to each other.

I didn’t cry after I talked to him on the phone today – first time. I honestly don’t know if that’s a good sign or a bad one. I don’t want to get used to the idea of him being away, even though I know, intellectually, I have to get used to it.

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All Checked In

Chrisa Hickey2 comments
After two years of ICG applications, denials, appeals, IEP meetings, inpatient hospitalizations, broken doors, bruises, rages, locks, letters to elected officials, and vigilance, Tim was admitted to and settled at ODTC yesterday.
They were very thourough at intake – took him for a tour, show him his room, then asked us a ton of questions to get to know his idiocyncracies, and that showed me they read the volumes of info I had already sent them on him. They don’t start school classes until next Tuesday, so he has a week to get the lay of the land, which is great.
Only him and five other boys on his dorm floor, and everyone has their own room, another bonus, and they have a big pool, big lake, big gym, and constant rotation of Special Olympics competitive sports teams. He was allowed to bring his art supplies, easel, stereo, books, posters. The school sits on 200 acres, and the staff to resident ratio is about 6 to 1. We’re very happy, and so was he. He practically threw us out!

Tim in his dorm room

I had such a stress release after we left that I burst into tears when we got out of the dorm, after helping him set up his room, and then came home and literally passed out for 3 hours. I talked to him after dinner last night, and he said his afternoon was great. Welcome to the honeymoon. I give it two weeks before he stops trying to hold on so hard and his symptoms start to show through.

This is the first time in his life that I won’t at least talk to him on the phone every day, and won’t see him at least once a week. I think it’s going to be harder on me than on him. At least I hope it is.

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What It’s Like Driving With Tim

Chrisa Hickey

Here’s a recap of my car ride with Tim to Walmart yesterday:

(incoherent mumbling while staring down in his lap)

“When are the Marines gonna be here? For the war?” (I replied, no Marines, no war here)

(whispering) “She says there’s no war here. I don’t know….”

(more incoherent mumbling)

“Woooo Wooooo!!” – while making an arm motion like pulling a train whistle

(more mumbling)

“No. No. I said no.”

(mumble, mumble)

“Lights, camera, action!!”

(giggle)

(more mumbling, with the occasional glance at me)

“Woooo Woooo!” — with arm motion

(mumbling and head shaking….then clapping)

“No. Maybe.”

(mumbling the rest of the way)

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