Friday, October 27, 2006
That said, he's still had some tough days. They have a 'safe room' where kids can safely rage and completely lose it. He's spent a majority of his days in that room. His first day was disastrous. But we're seeing signs of hope, he's using his words to describe his feelings a little better. He's not dreading leaving the house in the morning, despite his bad days.
One of the benefits of a day treatment program for kids like The Kid is that school is completely centered around their needs. There is no, "I don't have time to ______" from the teacher. There is a fully accredited teacher in the classroom, at least two nurses, several social workers, and a team of psychologists and a team of doctors rotating around the classrooms like satellites. Well, satellites that would jump back to earth whenever they are needed to fix things. Okay, bad analogy I suppose. Anyway, there are academics taught and worked on, but a great deal of the day is spent working on the more expressive aspects of academics: art, music, playing games in the gym or on the lawn. Don't discount gym... The Kid has such a hard time with the disappointment of losing or the careful science of social interaction within sports, especially just being a good sport. That kind of social interaction is one of his biggest difficulties. He needs more training in sports than reading right now, probably. I can work on his reading, and while I can play games with him to teach him about losing and being a good sport, what he really needs is to learn how to do that with his peers. One of the most amazing things I've seen this week was a ball game the kids were playing on Wednesday, and when The Kid was "out," he simply went and sat on the concrete wall with the other kids that were "out."No fight. I was amazed. Normally, that would be a trigger for rage.
But it's all baby steps. He's still having a really difficult time in the classroom. Like, I said, he's having meltdowns about 6 to 10 times per day. That's hours and hours of the day. We're currently in a wait and see time to see if they want to hospitalize him, inpatient, for a few days before they spend much more time in the classroom. The hospitalization would act as a chance to really stabilize him and work with him more intensively (out of the school environment) to get him on the right meds, really investigate root causes, etc, before the continued attempt to get him to function better in the classroom. I understand. I don't want him hospitalized, but I'm also cynical enough to know that I've got thirty days per calendar year through my insurance for mental 'inpatient' services. Each day of day treatment is equal to 12 hours of inpatient. Each day he's there, my countdown clock of time at this hospital ticks down. If he needs to be inpatient for a few days to help the classroom setting be more effective, rather than the contstant struggle he's currently having in the 'safe room,' then I'll be happy to give it a try. Nothing would be worse than to struggle for the next 15 or more days with only a little improvement, only to THEN have him hospitalized, and eventually run out of options when my insurance company pulls the plug.
Other things that encourage me:
1. He is going to get a neurologic work up next week. This includes a sleep-deprived EEG, and probably an MRI. Because of his frequent vomiting and the physical tics that he's developed, they want to rule out a seizure disorder. A friend of my sister's brought this to my attention a while ago, and we actually have an appointment to meet with a neurologist in January (the first appointment available when I made the appointment in September!). Because of this program, we get to do this next week. The EEG is 'sleep deprived,' I have to keep him up until midnight the night before the test, and then wake him up at four the morning of. This means I get to go all fraternity pledge hazing on The Kid. We'll call the frat Mu Gamma. Just for fun, I was thinking about instituting other frat-house hazing staples, like running naked around the house, cleaning the bathroom with a toothbrush, speaking only to his pledge mom (me) and learning the greek alphabet. I suppose we'll refrain from obligitory shots of Jaegermeister. I'm totally kidding, you know. (we'll definitely be doing the jaeger)
2. Right before we started this program, our regular psychiatrist took The Kid off of all of the meds he'd been taking previously and started him on Depakote. Depakote is a med that only works if it has an optimum level in the blood stream. It takes a long time to adjust and lots of blood testing to know when that optimum or therapuetic level has been reached. Because of the start of day treatment, we never got that blood level taken. The hospital did take it yesterday. I guess the therapuetic level is between 75 and 100 [whatever units of whatever to whatever in his blood]. The Kid's blood profile from yesterday only showed 37 units. He's essentially unmedicated right now. I've basically known this without the blood test, but knowing how off the mark he is, this just shows me how un-mitigated by meds his behavior currently is.
3. He's in a great mood. He's doing better with his anxiety. He's talking about his feelings. Ultimately, I think The Kid is encouraged. Which is the best news of all.
Monday, October 23, 2006
Second, I'd like to illustrate why I love Colorado.
Last Friday, it snowed. Quite a bit.
We woke up Saturday to a lovely blanket of snow and a clear blue sky. Naturally, a snowman was made:
Then, on Sunday:
I can't articulate it. But this is why I love living in Colorado. But pay close attention to the fact that The Kid is wearing sandals. And climbing on the carcass of our rocking snowman, a mere 18 hours after his, uh, birth. Heh. I heart Colorado, where snowmen aren't built to last...
Sunday, October 22, 2006
On his first day, he exploded when a child laughed at him because he dribbled food on his pants (applesauce, the offending food). He's reacting poorly to the school's behavior management programs, in fact, they are his worst trigger for outbursts. He kicked his teacher and hit students. It's not been good.
On Monday of last week, I expressed my desperation to the school psychologist. I explained how the psychologist is saying everyone should wait until she can treat him with the right meds, how he's just getting worse on them and we're running out of time. School is not a safe place for him or with him in it. I asked him what was next. He said "Day Treatment." This is supremely frustrating because I pursued day treatment a month ago, but was told by his psychiatrist that it wouldn't be necessary.
The school psychologist and I contrived a plan to get him into day treatment at the best hospital in town, with or without the consent of our psychiatrist. I agree that he needs intensive help, and I'm not waiting for the psychiatrist to fuck The Kid up with lots of crazy meds and no therapy. So, we waited for The Kid to get angry. The second he compromised the safety of himself or others, we called 911. Long story short, ambulance, emergency room, admission to day treatment. The psychiatrist has no say, although when she called me back (eventually) after my voicemail informing her of the week's events, she acted like she thought it was the best possible treatment for him all along. Grrrr.
So, next week we start "hospital school." It is an intensive outpatient system, wherein he is in a small classroom, does some instruction, but mostly moves around to doctor to psychologist to group to specialist if necessary. I wish I could say I'm hopeful that this will be a solution, but if I don't find a psychiatrist that I have a good trusting raport with, and if I don't find an ongoing therapist, anything they do there will pop up again in a few weeks, months, years.
I'm starting to realize that The Kid is far sicker than I ever imagined he could be. That he has a crippling mental illness that causes significant disability, not merely a challenge or a set of obstacles as he moves through childhood. I lay awake at night and imagine myself at 60, 80 and more taking care of my mentally ill son. I know that's defeatist and just unbelievably sad, but it's part of the greiving process I'm going through. He's sick. He'll never be 'normal,' not even in a nice sense of that word. As he gets older, this is going to follow us. I just hope we find the right resources to help us navigate that future. And that he has the fortitude to remember his good side, his strengths and his ability to succeed. I hope I can do the same.
Sunday, October 15, 2006
Saturday, October 14, 2006
And then there's this video below. I meant to take a still photo, but I accidentally had my camera stuck on video. My camera doesn't do sound, so watching this, I almost expect to hear the sounds of a movie projector, and The Kid's movements kind of look like something straight off of an old wind-up movie camera like my uncle had. Anyway, it's very cute...
Tuesday, October 10, 2006
Today was my last meeting with the folks at The Kid's school, which is now his former school, which is exactly how I want it to be...
His IEP was up for renewal last week, and today was the IEP annual meeting. I couldn't be happier to leave that bunch of people. In the end, my advocate I've been using counted at least 5 IEP violations over the course of the last month.
I've never not said that The Kid is a tough kid to have in a classroom. I just wish that they had communicated with me better, and that they had shown him more empathy.
In the end, they wrote in his IEP horribly inaccurate things. They said that he is a "student" for only 2% of the day. By my math, that is 8 minutes in a day. Other parts of the same document say that when he is effectively calmed down he participates in classroom instruction for 15 minutes at a time, and that that happens "several times in a day." So, going on that, we're up to 45 minutes a day, or a little over 10% of the day, so there's a discrepancy for you, albeit small. They also pull him out of class at least once an hour or so to take "sensory breaks" even though he is not labled with sensory integration issues, so a great deal of his time out of the classroom, not being a "student" is due to their "service time." This service time includes playing on the playground with a para. Great therapy.
They also mentioned that he displayed "obscene gestures," which I'd never been told about before. When I asked about them today, they said that he flipped them off. First, I secretly gave The Kid a high five in my mind. Then, flabbergasted, asked how often that happened and they answered only once. I really don't know why that had to be in the IEP, when of all the things that this child IS consistent with regarding the typical behaviors of a bipolar child, obscene or foul-mouthed is definitely NOT one of them.
They also gave him free rein to go to the social worker's office or the principal's office whenever he needed to calm himself. Now they are telling me that he would leave the classroom, and that was a major behavior problem in his day. They had trained him, however, that when the going got tough for him, he was supposed to go to the office. I just don't understand how they could expect The Kid to know when it would be appropriate or not appropriate to go to the office if they told him he could go down to the office whenever he needed to.
I could go on and on, but I need to say good bye to it all, and let it go. Ultimately, they are very poorly equipped to teach The Kid. I pray and I hope that this new school can.
Monday, October 09, 2006
In all we had a fabulous time and all of the troubles of the week were thoroughly girated out of my body. The Kid had fun too. He and I even had the most reasonable talk about the latest bad news from the school over $7 french fries and a soda at the park, and I told him about what to expect next week. We even talked a bit about how all this anger is hard on his cousins and his friends. It was heartbreaking, but it was also a heart-to-heart, which is invaluable.
Sometimes I forget how serious all of this is. The school and IEP violations they've committed have been perfect opportunities for my attentions and focus and anger to be directed at a source firmly outside of my own home. The bottom line however is that The Kid has a very serious, diagnosable mental illness and we're going to be on this bumpy ride for a long, long time. No scapegoat will get us out of that. Amusements are good for affirmation, however, and weekends are priceless for our sanity.
I'm happy to say that The Kid's personality is back. He is still doing that scary stretching thing and I will be calling his doctor tomorrow with those concerns. She swears they aren't tardive diskenesia, a disorder caused by psychiatric medications (she says the movements are not the same), but I'm scared shitless nonetheless.
The Kid has been suspended from his school, and so is heading back to my mom's house for the next three days. I don't even completely understand what happened at the school that caused the suspension, but I believe that it was: a) serious, and b) what they probably should have done instead of giving us that ultimatum of SIED program vs. no school, so at least they are kind of following the rules so far. This also means that this suspension will end on Thursday and he will start a new school that day. I've chosen a school, and all seems to be adequately promising. In all honesty, however, I'm too wary to be optimistic any more. I just hope the new school knows more about how to work with kids like The Kid. And I hope they are willing to try and learn new things if they don't.
I still don't know if they suspended him correctly or if they've broken other areas of disability law. Last week they tallied about 2 IEP/ADA/IDEA violations, so suspending him pretty much got them off of the hook next week, meaning, if he's not at school, they can't break the law anymore. Plus, The Kid won't be there anymore, so their lives are all going to go back to their perfectly normal and insidiously boring ways, which I understand they prefer. Who wouldn't?
We had our meeting last Tuesday and it was grueling to say the least. I stayed calm and stood my ground. The fangs only ever came out while my mouth was firmly closed, so I did no harm by losing my temper or presenting myself as the angry mama bear which can so terribly cloud discussions like that. I got the school to agree to strike entirely the IEP addendum which they illegally wrote. The Kid's annual review of his IEP was up on 10/3, so I obviously granted them an extension and they will have to write an official IEP. Whatever, I'm sure they'll do a bang up job of it. The beauty here is that I will have it written into their IEP that it must be re-written by the new school 30 days after he enters the new school, so all will change fairly quickly. Now, in preparing the new IEP, they obtained test data without my consent, so they're in trouble again, but it's really not my concern anymore. I've been assured by my advocate and by district personnel that the school is being investigated and will be somehow made to deal with their lack of training in these issues.
I really don't care anymore. Because there's a much bigger picture here: My BOY! He's sick! He needs care and time and understanding and most of all help. And that school was not helping, nor would they have helped at this time, even if they filled out every form pertaining to his disability at the right time. They can't do it. I sure hope the new school can.
Sunday, October 01, 2006
He's had such a hard time falling asleep, I've pulled out his old lullaby CD that we listened to for approximately 2 years when he was a baby. Tonight, even that didn't work, so I went back in to his room, and asked him to think about something calm and happy. Dumb suggestion, as Mr. Anxiety could in no way see beyond the fact that he was still awake and it was stressing him out. So, I asked if I could talk to him about a calm, happy memory. I suggested talking about a hike in the mountains, which he was not a fan of. He suggested Halloween, which I was not about to start talking to a boy who needed to be calmed down about the spookiest night of the year, aka, the only day of the year wherein you can go ask people for candy and they will actually give it to you.
I asked him if he could think of anything else he'd like me to talk about. Sweetly, he said, what about when I was a baby? I turned to goo. Of course I'll talk about when he was a baby. Any time.
I told him how we used to go downstairs to the bedroom, I'd play his CD and give him some milk. That I'd rub his back just like I'm doing now, and rub his head, too. I told him how I would listen to the sounds outside, the snow, the neighbor's windchime, and how sometimes I would sing to him. He asked, "Can you sing me one of those songs now?"
The puddle of goo I already was turned to goo.
So, I sang him my favorite. The one that was not written about being a single grad student living a nice single grad student life and finding out that you were going to have a baby and then being given the most challenging, least like my own personality child I could have imagined, but it could have been:
Life was a song, You came along
I've laid awake the whole night through
If I ever dared to think you'd care
This is what I'd say to you:
You were meant for me
And I was meant for you
Nature patterned you
And when she was done
You were all the sweet things rolled up in one
You're like a plaintive melody that never lets me free
But I'm content
The angels must have sent you
And they meant you just for me...
And now he's asleep. The key to all of this is to remember that no matter what happens, no matter what drugs he's on or therapy he's undertaking, or letters of complaint I have to write, or hours of my weekend spent working from home or battles I have to don my suit of armor for, he's my baby. Always and forever. He's why I'm here, today, being the person that I am.