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.

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.

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.

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.

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!

So – what do you do about a kid who doesn’t talk at age 2? We went to our pediatrician. He told us our son had ‘second child syndrome’ – basically, his big brother did all the talking for him, interpreting his noises and anticipating his needs, so his speech development would be delayed. And we bought that. After all, our oldest was good at interpreting a grunt as meaning, “I want juice,” or “he’s hungry.” Tim also started showing his frustration, we thought, with the inability to communicate. He’d do everything from throw a toddler tantrum to, no joke, one time picking the twin sized mattress off his bed and throwing it at us.

By the time he started pre-K at age 4, Tim had only two and three word sentences. He would say, “cool bus,” when the school bus went by, and baby talk like, “I hungy,” when he was hungry. His pre-K school backed us up, and suggested he be tested by the school district and that we go to a neurologist. Which we did.

After days of testing of all types, the neurologist told us Tim had PDD-NOS, or a pervasive developmental disorder, not otherwise specified. I didn’t know what that meant then, but now I know it is an autism spectrum disorder that basically means they have no clue what’s wrong with your kid. The neurologist went so far as to tell me that he would have diagnosed my son as autistic, except he has excellent eye contact and a good sense of humor. Those two things alone preclude most autism spectrum disorders, but again, I didn’t know that then. So we went on our way, thinking our son had an autism-related disorder. The school district developed an IEP for him, and in Kindergarten, he was placed in a mixed classroom, meaning, mixed special needs kids and mainstreamed kids, with teachers for both.

New and not at all pleasant behaviors starting coming out at age 5. He took to hiding under furniture or running away from his class rather than participate. He had very high levels of frustration – the smallest thing could set him off. And, while his speech was improving with speech therapy, the school district didn’t think they could keep him in the blended classroom, because he was just too much of a disruption.

We moved back to California from Georgia just before he started the first grade, and had to go through the whole ordeal with the IEP and the new school district again. They decided to put him in a self-contained special ed classroom with the addition of speech therapy twice a week. He had an amazing teacher there, and she did wonders to figure out what his stress triggers were, and how to get him to calm down and focus. Tim’s speech and ability to participate in class improved tremendously in her class. We felt he was nearly caught up by the time the school year ended. Since this teacher taught a combined first and second grade, we asked for him to be in her class again, but we were denied. And all hell broke loose the next school year.

More tomorrow.