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The Time In Between

Chrisa Hickey2 comments

Tim was discharged from the hospital last Saturday. I’d taken our daughter up to Wisconsin to visit my parents for a few days on Thursday, and Tom and Tim joined us on Saturday late afternoon. I wouldn’t normally take him straight from an inpatient stay to visit family, but this was his last chance to see his grandparents this year before he goes into residential next week, as my parents live in Wisconsin in the summer, but the Southwest the rest of the year.

It’s nearly a five-hour drive between our home and my parents, and Tom said he was pretty good. Of course, he plugged him into his CD player, which helps. But it was a testy few days. Tim’s….habits, for lack of a better term…..when he’s not entirely stable can make the faint of heart run for the hills. Arguementative for arguement’s sake. Carbo loading. Mumbling incoherently. Excessive bed-wetting – and when I say excessive, I several times a night without bothering to get up – is right up there on the most offensive. Imagine a grown man, awake, peeing himself two or three times a night and then marinating in it, then coming down with it all dried on his skin and pj’s to say good morning.

My parents love Tim to death, but have a hard time dealing with all of this. They try. My dad tries to give Tim pep talks on behavior, and tries to rationalize with him how it makes it hard for him to be around, and that it doesn’t help him become more independent, which is something he desperately wants to be. Tim listens, but it doesn’t sink in any better when my dad says it than when we do. My mom’s frustration shows, and Tim wants to please her, but when he’s off he’s just not capable of doing so. And he is capable – he spent a week with them in June, all on his own, and did great. No bed wetting, very little food pilfering, and very helpful to my dad. He did so great that my parents questioned whether or not he had to go to residential at all. They are now sure he needs it, after the past three days.

Five days until we check him in to ODTC. Not that I’m counting. It’s a moderate “don’t poke the bear” day around here today, and I have to think that some of his current anxiety/agitation is because he knows it’s only five days until he goes to ODTC. He wants to go, and has articulated why very well, but I’m sure this is hard on him. Bless his heart, when I sit down and try to talk to him about how he feels about it, he says that he’s happy, looking forward to going, needs to go to learn to be more independent. I think he’s trying to protect my feelings, and keep himself from getting upset. For once, I wish he’d let his feelings all come out. Usually I fear that.

So, for the next five days, we’re making things as mellow as possible. No plans. No stress. No big redirection on behaviors. Just hang out, play basketball, shop for some things for his dorm room, play on the Wii. I don’t see the point in pushing him to use his coping skills, fight over his eating, or doing anything else that raises his stress. We might as well try and enjoy the weekend and get ready for Tuesday without putting a huge emphasis on it.

In the back of my mind, I am paranoid about how Tuesday will go. First, ODTC has to get through a hurdle of the Illinois review before they are reopened for admissions on Tuesday. The review is Monday. Nothing like cutting it close. If for some strange reason they aren’t reopened (which, they say, has never happened), they can’t admit him on Tuesday and then our whole plan is shot. But let’s not think about that. My head might explode if I do. Then there’s getting him up, dressed, and in the car for the hour drive to ODTC. He may refuse to get out of bed / get in the shower / get dressed / leave his room. That’s not unusual, and it’s nearly impossible to get him to do it, at 5 foot 11, 200 lbs. Then there’s his habit of jumping from a moving vehicle when he doesn’t want to go where the vehicle is going. We have child locks in the backseat of both of our cars to prevent this so I’m less worried about it, but it’s still a possibility. I’m thinking about asking one of our neighbors to come over sometime this weekend to give Tim a pep talk. He’s an elementary school teacher, and Tim just ADORES him. He had one talk with Tim over the summer about how cool it was to go away to school, and Tim was pretty puffed up after their talk about going. Yeah – now that I think about it, I think I’m going to call him and ask him if he can spare an hour to hang with Tim and talk about how cool it is to go to school. I hope that helps lower his anxiety to get us to Tuesday.

Our effort to not make Tuesday ‘special’ means that, yet again, we ruin the day for our other two kids. It’s also the first day of 8th grade for our daughter, and first day of college for our oldest son, and what are we going to do? Shuffle them out the door and the concentrate on getting Tim ready to go. Yet again, Tim’s needs overshadow the day for them. I hope we can make up for all the days and times and fun they missed because of having to concentrate on Tim in the weeks and months to come.

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We’ve Got A Date

Chrisa Hickey2 comments

August 25th.

That’s the official date Tim will go to ODTC for residential treatment and school. It’s so close, but the anticipation, hoping that date sticks, is killing me. It’s been such a long road to get him an ICG grant and get him into residential that it almost doesn’t seem real.

Plus, the guilties kick in. I know this is what’s best – for him and for the rest of us – but it’s hard sending your child away. I know, intellectually, that it’s not my failing as a parent, but that doesn’t make me feel less like a failure emotionally.

Tom’s doing well. Since his “incident” (and we’ll leave it at that) on the 7th, he hasn’t had a single drink. I’m proud of him. It was his choice, but my dissapointment and stress over it had some impact, I’m sure.

Today’s another date, mine and Tom’s 19th wedding anniversary. Even without all the stress of our daily lives, we’ve beaten the odds. Married before 25, first kid in our first year of marriage, two special needs kids, and a stay-at-home dad – all are markers for divorce. But here we are! And, save the incident from last week and all the issues with Tim, we are happier than most other couples we know.

No matter what we go through, we’re still a team.

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Guilt and Anger

Chrisa Hickey2 comments
We have a date – August 24. That’s when Tim can be admitted to ODTC. Between state budget issues (like not having one), and good old fashioned bureocracy, it will be nearly 50 days between getting the ok to admit and actually getting admitted. Mind you, none of the bureocracy was ODTC’s fault.

Today Tom and I start the chore of cleaning up his room. Here’s how it looks now:

Be glad this blog doesn’t have smell-o-vision, because it smells like urine, sweat, and rotten food. It’s hard to tell, but there’s even a moldy bag of hot dog buns he pilfered on the desk.

Tim’s confused as to why he’s in the hospital. In times past, we tried to handle his slide into psychosis at home, and didn’t get him into the hospital until he’d collapsed into violence, vandalism, or run away. We didn’t let it get that far this time, and he’s angry that he was admitted without being in handcuffs first. He doesn’t understand that we’re trying to prevent law enforcement intervention.

I talked to him on the phone this morning, and now I feel guilty, and I’m angry. He’s good at making me feel both. He hates being indoors all day, and now he’s in a locked ward. And I wonder if we did jump the gun, getting him into the hospital when we did. I told him I love him, and he sniffed and said, “yeah, ok.” I hung up and cried.

Then I look at his room, and it irritates the shit out of me that we have to live with someone who thinks pissing all over and giving fruit flies a place to breed is acceptable behavior. This is the third time this year we’ve had to clean up human urine and fumigate. The carpet is just about on its last legs. I mean, how much soda and piss can a carpet absorb before it simply falls apart? The furniture has gouges in it. There are holes in the walls. The door is completely smashed. What the hell did I do to deserve this? I had someone tell me last week that God doesn’t give us more than we can handle. I wanted to punch her in the face.

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Insomnia

Chrisa Hickey2 comments

I don’t sleep much. I used to. My husband Tom used to call me a stress narcoleptic – when I got stressed out, I’d get tired and nap a lot. Not depression tired, just brain-tired.

Now I’m lucky if I get 5 hours a night. About once a week, I don’t sleep at all. It’s after midnight now, and I’m not even close to tired, even after today’s shenanigans. I think I’ve seen every Law & Order ever broadcast.

I could do something about it. I have a prescription for Ativan, for anxiety and sleep problems. But I have this irrational notion that if I need meds, I’ve given up. I know it’s irrational – I feed my kid 10 pills a day, after all – but it still sticks in my craw. I gave up last year – my shrink put me on antidepressants – and I felt crappy the whole time. The withdrawals were intense when I decided I’d had enough and weaned myself off of them. I had the spins for a month.

Tom sleeps pretty well, but he’s a self-medicator. Scotch is his medication of choice. I’m not a big drinker. I think it’s a control thing. I hate being out of control.

And I’m always out of control, it seems.

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Hospitalization #12

Chrisa Hickey

It’s gotta be some kind of record. Not that we’re trying to set a record, or anything.

Tim’s been destabilizing all week – two admissions on his part of hearing voices, two other that we’ve recognized (pacing, talking to himself). Hygene refusal. MAJOR bed-wetting – his room smells like a bus terminal. Irritation. Paranoia. This morning, he was agitated, pacing, talking to himself, refusing to talk in anything but 120 decibel, 300 words a minute rapid-fire speech, or sit in a coma-like stupor for 30-90 minutes at a time.

I freaked. I know what PTSD feels like now – that dread, panic, and flashbacks of the last time he was like this. Last time – which was just this past April, mind you – he shredded the contents of my wallet (cash, credit cards, you name it), brandished a 6 inch kitchen knife at me, punched me in the face, swore like a sailor, then ran out of the house in 40 degree weather, barefoot, at night, three miles before the cops caught him. All that flashed before my eyes as he sat on the stairs, rocking, staring without blinking at the front door I was blocking with my body so he wouldn’t bolt.

Now, normally the next thing we can expect is rage, violence, and running away, followed by a call to the sheriff and an ambulance ride to the psychiatric hospital. This time, I decided to nip it in the bud before law enforcement was required. When the flashbacks stopped, I called the Illinois CARE line, a hotline for parents with a child in a mental illness crisis. Then sent out a SASS (screening, assessment and support services) worker – one we’ve worked with before – right to the house. He did an assessment of Tim, and agreed, that he was destabilizing and probably needed hospitalization.

Now, I lost my job six weeks ago, and our insurance expired yesterday. Even so, our mental health benefits for the year were exhausted in May, so we had no coverage for an inpatient stay. our SASS worker got us approved for 30 days of temporary state Medicaid, found him a bed, and got him admitted this afternoon. I don’t know why we didn’t try this before.

Is it a good thing or a bad thing that all the staff on the adolescent ward looked up when the door opened and said, “Hi Tim, how you doing?”

Now my goal is to get him from this inpatient stay right to the residential treatment center in Oconomowoc. He’s already accepted – just got to get another set of state workers off their asses to get the paperwork approved. I start calling the head of DMH every hour on the hour until I get her at 9 AM. I’m persistent, if nothing else. Wish me luck.

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The Backstory Part Six

Chrisa Hickey2 comments

So – Streamwood. This is where Tim currently attends day school. Since he’s been at Streamwood his IQ has actually DECREASED, courtesy of the damage psychosis does to the brain, he’s had 4 more inpatient stays, bringing us to a grand total of 11, and nothing much else has changed. That’s not entirely true. He is more aware of when his psychosis begins. That’s about it.

In 2007, we heard about and applied for an Individual Care Grant from the State of Illinois. It’s a grant for children with severe mental illness to pay for residential treatment for these kids, under the age of 18. It’s also harder to get than top secret government clearance. If you are interested in learning more about an ICG grant, email me, and I’ll give you the advice we got, that finally got us the grant, after three applications and two appeals.

Enough back story. My plan with this blog is to use it as my own therapy – a way for me to relay my thoughts and feelings about raising a child with a severe mental illness to the ether. If I never have a single reader, that’s ok. That’s not the point. But if you read and have comments, questions, or dittys to share, feel free. I’ll read them all. I know I’m not alone in this.

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The Backstory – Part Five

Chrisa Hickey

So Tim started his sixth therapeutic day school program at Metro Prep in Des Plaines. While we really liked the staff there, particularly Tim’s therapist and his one-on-one aide, Tim’s rages were getting more intense and more frequent. The school operated on a point system – get points for doing positive things, get points taken away for negative things. If you have a kid with bipolar or another mood disorder, then you know – points systems nearly always fail. Why? Because one you’ve lost points, the entire day is shot – might as well lose them all. Tim most definitely operated this way.

It was during this time – and the several inpatient stays needed during his time at Metro Prep – that we finally found a child psychiatrist that believed us – Tim had something going on besides oppositional defiant disorder, or a conduct disorder. Tim wasn’t autistic. Dr. D (as we call him) listened to us, worked with us, and wanted to help us. It was a strange but wonderful feeling to find a professional that WANTED to work with us.

Tim’s rage got to be too much for Metro Prep, and they gave the district 30 day notice that Tim could not come back. We’d worked with the school district, and we were pushing for a residential program – Tim had blown through six day programs, and there were other day programs that would not accept him. But the school district refused to hear it. They felt we had not exhausted all of the day program options.

There was only one other day program in a 40 mile radius that was willing to consider taking Tim in – Northwest Academy at Streamwood.

More later.

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The Backstory – Part Four

Chrisa Hickey

Ok – so tomorrow took a bit longer than I thought. Life happens.

So – where were we? Oh yes – Tim’s first therapeutic day school in Illinois. Without naming it – but think of a musical starring Robert Goulet and you’ll get it – it was an unmitigated disaster. This program does great with autistic kids, but with a kid like Tim who, in all fairness, we weren’t totally aware then, was all about anxiety and psychosis, it was chaos. Tim had to be physically restrained nearly 50 times in the 18 months he was there. The last day there was interesting – I went to pick Tim up to take him to see a new psychiatrist, and he attacked me, in the classroom, in front of the entire staff. They were horror stricken, but to me, it was life as normal. I was used to being beat up by my 11-year-old.

That led to Tim’s first inpatient hospital stay, also an unmitigated disaster, but I’ll save that for another post about what to do if your child requires hospitalization. If I knew then what I know now, that first hospitalization would have gone far differently, particularly in how we interacted with the staff and doctors.

Tim came out of that hospitalization and into another location of that same program, but that didn’t go much better. On the typical day, Tim’s anxiety level would elevate, and he’d be chased around downtown Des Plaines by a staff member for a good portion of the day.

Tim was on four different meds and had three inpatient stays in 2006, and near the end of the school year, the therapeutic school gave our district 30 days notice that they couldn’t serve Tim any more. He’d been asked to leave his second program in Illinois, fifth over all.

More later.

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The Backstory – Part Three

Chrisa Hickey

Hell broke loose alright. Tim was put in a special ed class with a teacher that thought special ed meant that he just needed more time to do assignments. If he got up, she would get huffy with him. If he talked, she would reprimand him. After about a month of that, he couldn’t take it anymore – and expressed his displeasure and anxiety with her by throwing desks at her, or pencils at her, running away from her or biting her. We tried to intervene – they tried to expel him – neither of us succeeded. He repeated this behavior with the next teacher the following year, but this time it was mostly running away – all the way off campus and around town. The school couldn’t keep him safe during school hours.

The special ed department called us together and suggested that Tim go to a full-time therapeutic day school. We went to visit a few and selected one that specialized in autistic kids. Remember, we were still working under the diagnosis of autistic.

He lasted 10 whole days before they asked him to leave. They couldn’t handle his rages. He raged more at school than at home. Looking back, it was because his anxiety level was much higher at school, but we didn’t know that then. He went through three therapeutic schools in four months, all asking him to leave. We didn’t know what to do.

We ended up leaving California for Illinois, for a number of reasons, but one was the schools. California schools just weren’t that great, especially for special ed kids. We got to Illinois, handed them Tim’s IEP, told them he was in a therapeutic school, and waited to see their response. They decided to continue that, and put him at the first therapeutic day school he attended in Illinois.

More tomorrow – I promise!

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