Saturday, August 04, 2007

Quest for a Solution

Here we go again with my son.

I am so upset, frustrated, sad, and raw that it's gone past crying when I talk about him. Now the tears start when I start typing about him. This wonderful kid is killing me, body and soul.

We ended out last year's school year with another IEP meeting. (Those are the meetings which codify his Special Ed plan and implementation.) All year long we'd been saying that he had to get to know his fourth grade teacher before third grade ended. Well, long story short, at the end of the year there were vacancies in fourth grade, so no one knew who his fourth grade teacher would be, but there were promises made that he would meet his new teacher at least once before school started. (That' not QUITE the same thing as having him build a relationship with the new teacher during the school year, but what can you do if the people aren't hired yet?) At that IEP meeting it was also determined that he would, for three weeks, attend a camp for kids with behavior problems.

I'm so impressed with this camp. The director and his senior staff are all psychologists; the counselors are college seniors majoring in psych. Super positive, super consistent, high energy, respectful: a great place.

The first day my son threatened a counselor with a rock. I have TONS of respect for the staff, and I can tell by the way they told the story that they tried at every opportunity to give him the chance to calm down. He's stubborn, Saul is. Once he gets truly riled up, he's not stopping for anything. My son kept right on escalating, until the assistant director, Zach, had to physically restrain him. Well, then it's all over. Dear Butcher had to go get him early. (Zach asked Dear Butcher who Mrs. D was -- Saul had been screaming the name of the woman, an untrained aide, who assaulted him three times during school.) Shit, you know, as a mother, that's enough to send you right over the edge.

Zach and Dear Butcher spent another hour talking about Saul and with Saul. The kid kept coming back to, "Well, I never THREW the rock," and (something of my favorite) "You know, you can put up a whole wall of rules, and I'm going to find the loose brick there and get through it." (Zach turned to Dear Butcher at that point and said something close to, "Pretty advanced for his age, isn't he?" Yep. That's Saul. Too darned smart for his own good.)

He had to be restrained by another counselor the next day, but he calmed down, and the day after he had perfect behavior points and won "Camper of the Day". Yes, we're seeing improvements, he's getting it, he's listening to us and to himself, and he's coming back with some hysterical vocabulary. "I got a point for initiating contact today at lunch!" Gotta love psychologists.

(side bar) Another funny one:
"My primary behavior goal is to be more reliant. Resistant?"
"Surely it's not resistant, Saul. Maybe, ummmm, resilient?"
"Yeah! That's it. Resilient!"
"That's a good goal!"
"Yeah.... What does resilient mean anyway?"

First week went well overall. I had a conversation with his principal who's back at work about her new hires and how to set up Saul's environment at school. I had to warn her though that he Could Not come in contact with Mrs. D, and that Zach had reported that Saul was exhibiting new behavior. After he calmed himself down, once they were inside in opposite corners of the room waiting for Dad to arrive, Saul would talk to himself. He was able to whip himself back up into his previous anger and would start coming back across the room towards Zach, yelling and accusing him all over again. Saul has kicked out in frustration before, but this aggression is brand new.

Second week of camp (this week): things start off great. Mondays and Wednesdays the kids go by bus to a swimming pool. Wednesday, the buses never came. 134 kids with behavior problems standing in their swim trunks in 98 degree heat, waiting for the buses which don't show. Boom!

Saul tried to leave camp, but his counselor stood between him and the entrance to the parking lot. (New behavior--) He spit on her and started swearing. Then he took his shoe off (wha?) and threw it at her. An hour later I was called to come get him again. Zach met me at the car in a fresh shirt because his was again soaked. (Interestingly, he immediately stopped his aggression and calmed down when they brought out a video camera; they told him they had to document his behaviors. Saul said he didn't want his parents seeing it, so he stopped and asked them to take the camera away. Whoa.)

Thursday I talked with both the Director of Special Ed in the District and with Saul's psychiatrist. SpecEd Director is intrigued that he's targeting adults, not kids, and she feels as if this ties into her observations of his anxiety attacks he had in February where he was unable to come into the hallway and instead stayed out in the rain pacing for hours. She's as concerned as I am about what this means for his behavior during the first week of school. She's trying to assemble a team of people who know how to respectfully and carefully restrain students to be stationed at that school for the first week. We agree that all adults have to immediately meet. Also, she asks me to ask the camp director if he can help her in her search for an appropriate private placement for him if the public setting will not work. So far she has found schools which will take in violent or disturbed children, but which would terrify Saul, or ones which teach brilliant and sensitive kids, but will not take in kids with episodic behavior, as it terrifies the other students.

My conversation with the psychiatrist is un-fucking-believable. Saul's currently on Ritalin for impulse control - I want him switched to an anti-anxiety, which the psychiatrist had said he would do at the end of the summer when school anxiety was likely to start up again. Psychiatrist now says that there's no point in the anti-anxiety, because it won't build up fast enough to affect his behavior at camp (yes, I know that), and he can't prescribe it now to prepare for the start of school, because he can't predict what Saul's behavior will be in the future. Maybe he WON'T act up. He's older now. Maybe he'll tolerate it better.

Oh. My. GOD!

How many YEARS have I been saying to people that he is at his worst in the beginning of school? Please stop telling me that he'll grow out of it. Please. PLEASE! I'm trying to be proactive here, folks.

Then the psychiatrist say he has to get off the phone, but maybe I can set up an appointment with him to discuss meds some more. "He may not need any medication at this point. You're seeing that Asperger's come out now. But remember, nothing succeeds like success. Just keep him in a positive place, and he'll learn how to deal with his Apserger's on his own." Are you fucking KIDDING ME? Aren't you a DOCTOR? Do you even TREAT any Asperger's kids? Do you know that a lot of them are on, wait for it, anti-anxiety medications? Watch Suisan walk around the house muttering at walls and gesticulating at ghosts.

Thursday night Dear Butcher and I go to a parent's meeting at the camp, and ask the Director about private school referrals. He's been running the camp for 15 years, has a staff of 25, and knows of no school which would meet Saul's needs, nor do any of his staff work at a school like that. But he'll ask around. Great. Perfect. If he can't control himself in a public school, then we're looking either at homeschooling, where I am responsible for keeping things interesting, social, and positive 24/7, or a placement in a facility for violent children. Fuck me.

Friday I head off to the Psychiatrist's office full of vim and vinegar. You'll be happy to know that Saul's behavior is all my fault. According to the psychiatrist, Saul acted up on the first day because he knew that I was nervous. Saul should be so grateful that he has a father like Dear Butcher who can come and get him at camp. I need to keep things positive and light.

I swallowed every single, "Fuck you, you ignorant asshole. I AM the one who keeps things light! Dad is not perfect, you ass! I'm trying to HELP my kid by getting him meds! Isn't that why you're fucking on this case, you arrogant fuckity fuck!" I nodded respectfully at every platitude he spouted. He gave me titles of books to read. Oh, thank you. He talked about success and self- esteem. Oh, thank you. He talked about the beauty of a complex child. Mmm, hadn't considered that. At the very last minute of the hour, I told him that I needed that prescription now, and that of course I wouldn't DREAM of starting the meds until I had talked to Dear Butcher and he had imparted his wisdom unto me, and that yes, we would together, as good parents, curl up in front of a fire and read passages of these books together to each other. Mmm. Togetherness. Now Give Me The Damned Prescription! Thank you.

When I got in my car, the empty gas tank light went on. Fuck me. While I was filling up the tank, I got a call from camp to please come get Saul. He kicked and struck the camp director, Dr. Bob. This was his third strike on a three strikes aggression policy, but we could talk about it when I go there. Fine. It will take me at least forty minutes to get there, as I have to go track down my eldest daughter who's at a sleepover. OK.

I start heading home, calling the friend's house, who won't answer, when a cop pulls me over for speeding. Jesus Christ. Incoherent sobbing has a way of turning a speeding ticket into a "Calm down and slow down, OK?"

On the road to camp, I called the SpecEd Director again. More sobbing. We're still going to meet, and she wants to observe the camp program and ask them to help with Saul's behavior plans, she's even going to ask if they have any counselors who are interested in taking a job at the district as aides, but she's now talking about having him at home. Fuck me.

At camp, I started crying again. Zach pulled me into a doorway behind some hedges and was very, very kind. He wants to keep working with Saul. He wants Saul in their after school program. He wants to come to Saul's IEPs and he wants to work with the District. He wants Saul to come back next year to camp. Saul has made progress and will succeed at camp. He's bright. He's caring. We respect him very much. We just don't have the staff to monitor him if he takes himself out of an activity for hours on end. He's going to get through this. We're not ending out relationship with Saul.

We went to get Saul. The day before, Zach had given Saul a half-dollar coin he had found on the ground.

"Hey Saul. Do you have that coin? OK," says Zach, holding it in his hands. "I'm giving this back to you. I want you to know that this coin means that I respect you and like you. You look at this coin, and I want you to know that it means that I am going to see you again. I want you to keep this and look at it when you need to to remind yourself that I care about you. Zach cares about you, and Zach knows that you are a great kid with great ideas. You need to head out with your Mom and get some lunch. That pizza didn't look so good with the footprint on it, you know?"

The grin on Saul's face would have lit up a city. "OK, Zach." He turned to me and said, "Dr. Bob said I was paranoid. Twice he said I was paranoid."

"Well? I dunno. I think we have to talk together with Dr. Bob, don't you?"

"Yeah."

Zach said, "No one's out to get you, Saul. We really like you and respect you. You're very, very smart. We're going to help you through this."

"Saul," I said. "Camp is ending, but not Quest. OK? We're going to keep up with Quest and you're coming back next year for more swimming and more games, OK?"

"OK. Love you, Mom."

"Love you too, man."

------

So we've got two weeks at home before school starts on the 20th.

I'm right back, albeit with more resources and more information, where I was at the start of the year last year.

I'm dying. How in the hell is this going to get better, and when will it get better? He doesn't act up at home in the same way he does at school, because we run our lives around him. But, seriously, I don't know how I'm going to make it through.

18 comments:

Kerry said...

I have no ideas or suggestions, but I wanted to pass on my sympathy and oodles of respect for the way you are dealing with all this.

The psychiatrist sounds like an idiot.

Marianne mcA said...

No suggestions either. (Though I agree with Kerry - are you stuck with this psychiatrist, or do they let you change?)
And again like Kerry, I'm full of admiration for the way you're dealing with the situation - must be impossibly difficult for you both, as well as for the children.
Trite as the advice is, and asinine as it undoubtedly sounds, do remember to look after yourself - if you fall apart, then you're no help to anyone, which means you have to sometimes put yourself first.

(Other cliches available today include: 'easier said than done.')

CindyS said...

(((((((Suisan)))))

Is there an Asperger support group in your area? That's probably a stupid question as it's probably rare.

My Godson Zach has really turned a corner. With the anxiety meds he's on he has grown up quite a bit in the past year. I guess one of his Church leaders told him that he had really grown as a person. And Zach said 'Well, I am eleven you know.'

I really hope that the school finds the proper support system for Saul. Zach starts in a new program in the fall and he actually seemed relieved to be going somewhere different (entirely different school) to get the help he needs.

CindyS

Suisan said...

I'm on an online support group, but after a while the bitching doesn't seem to do much. I need a face to face one.

I did meet another parent at the camp who's son made friends with Saul. The boy has Asperger's too, and she's been homeschooling him. So I'm going to start there.

Got a message on the machine from the camp director yesterday. Kinda disturbing. He highlighted that since Saul had directed his aggression "towards ME" that the camp couldn't meet his needs. Surely this isn't all about ego, is it?

Then he said that because of the intensity of the rages, it may not be Asperger's but Bipolar. OK, fine. Same meds, same treatment. Why is it that every single person who sees this kid decides to diagnose him with something new? The circle of diagnoses, starting in Pre-school goes: Temperament, ODD, Anxiety, Bipolar, Intermittent Explosivity, Temperament, Bipolar and ODD, Intermittent Explosivity and ODD, no ODD but Anxiety and IE, Asperger's and Anxiety but not ODD, ADD, not ADD but Apserger's, and now Bipolar.

It's a fucking merry-go-round.

Lyvvie said...

*BIGHUG* Wish I could help, so I'll just send love instead.

Chris said...

No advice here, I'm afraid, but you have my utmost admiration for not giving up, for fighting for your child. I really hope the school situation improves.

doug said...

Suisan, I have to wonder if homeschooling wouldn't be the best solution in the long run. It's not a 24/7 proposition. There's so much BS in regular school, you can get a full day's schooling done in 3-4 hours tops. Saul having a bad day? Fine, it'll all even out eventually. The main thing is, though, that Saul would have to want to do it that way. If he's motivated to make it work, it would work.

Well, that's my 2c. I know we don't have the problems you have, but it's a solution that worked for us. It also seems to me that this is something you could consider on a trial basis -- four weeks, maybe? It's not like it has to be a permanent solution.

Suisan said...

Doug, we're going to have to default to homeschooling as it is.

At this point everybody is leaning towards keeping him home at the start of school. The District can send over a teacher for "home and hospital" instruction" for a few hours a day. That would allow us time to change the psychiatrist and go on different drugs. I spoke to the camp director last night. He's recommending small doses of an antipsychotic. But I'm sure this psychiatrist won't agree.

Overall, I know it would work for Saul. (No groups, less stimulation, etc.) On the other hand, I'm not sure what this does to me. I struggle to keep things structured as it is. If he's home, it's also clear that I will not be running for re-election. And that a significant part of my adult life. Worrisome.

Doug said...

Well, you may not immediately see the comparison, but this reminds me of when Karen had to drop out of grad school due to her illness. She had defined herself as a chemist/physicist first and foremost, so it was devastating for her to drop that part of her life.

I don't see any easy choices here, but I suspect that if you chose Saul over the school board, your life would still have as much meaning as it does now, if not more.

Suisan said...

With all respect Doug, that's not quite what I meant. I mean that with a tendency to depression, it's worrisome to drop out of an adult support network that exists because I show up to meetings frequently. Yes, obviously I can work on building another one up, or put more effort into the social aspects of the relationships that I have. It's just that that's yet another project.

I define myself as a school board member here and in writing a lot more than I do in person or in conversation. I'm happy to choose my son over my work. But my talents and generally my interests are Not in homemaking nor in childrearing. I do what I do for my children to prevent someone else from doing it worse, not because I enjoy it.

Kate R said...

just hugs, is all. I'm sorry.

Fuck it. Fucketty fuck, fuck.

Kate R said...
This comment has been removed by the author.
Kate R said...

Oh, look, of course I have advice: Keep that Zack. The world needs more Zacks . . . and maybe that other home-schooling mom, too.

Rising Rainbow said...

While I don't know a thing about Saul's problem, I have lots of experience with those bloodly IEP's. I found them to be nothing more than a promise of hope that never saw the light of day. I can totally relate to your frustration in that regard.

Reading your post, I'm wondering what you do for you so that you can have the energy to keep up with this. I know it's hard to find the time, but it's harder in the long run not too.

For me, it is the horses. I spend time with them and I can deal with the rest of life's crap and my daughter's brain damage. But I know I have to find that time for me or it all seems to be burying me.

Sounds like finding a new psychiatrist is a good thing. Can you get a referral from the organization for Asper. Syndrome? Sounds like you need someone knowledgeable and compassionate. Geez, novel idea for a healer, don't ya think?

I hope things settle down for you.

Suisan said...

Rising Rainbow: I try to find stuff for me to do for myself, but really, that's a lot of the struggle that I find myself in right now. Not enough time. By the way, I checked on your website a few moments ago. You have some nice horses -- I like Khemosabi babies quite a bit, and your mare, Bint Gammay Rose, has a number of horses I really admire in her pedigree.

Kate: Advice is fine. I'm happy to get advice, you silly person. ;-)

Kate R said...

My bil and neph (who just left) did homeschooling for a while because of some behavioral/impulse control stuff. It was tough but the bil said that once they got connections with other homeschoolers, it got easier.

And the neph got under control enough to go to school. He's in high school now and doing pretty good, especially compared to earlier in his schooling career.

Kate R said...

btw, about my own situation: bil really was clear that getting an IEP was the right thing to do with any child who'll experience trouble. That's helped me with my husband (who respects his brother a lot).

Suisan said...

Yes, Kate. That IEP is IMPERATIVE. Critical. Required. And any other strong adjectives you can think of.

Otherwise people have no need to change what they are doing to help your kid.