Friday, April 18, 2008

The Good, The Bad, and The Ugly



The film, "The Good, The Bad, and The Ugly" is a complex yet wonderful western where sometimes crime does pay, and good goes unrewarded. Life has certainly been complex around our house for the last month, but unfortunately it's been far from wonderful. And the good has been far outweighed by the bad and the ugly lately.

Buddy Boy started out this year having the best year he's had so far. He loved school, thrived with being included, identified with his classmates, and seemed to really blossom. Sure there were some minor rough spots, but overall it was shaping up to be a stellar year.

Oh how quickly things can change. If things don't turn around very quickly, he'll be expelled from his school within a week or so, and I won't really blame them.

But let's get back to the good. Buddy Boy made his First Communion the Sunday after Easter. He was having some anxiety and a few outbursts in school running up to that day, but we figured it was related to the upcoming ceremony. Other than a short crying jag in the procession coming into the church, he did a great job. I was really proud of him.

About a week and a half after that, he bit his teacher. He hasn't lashed out like that in over a year. His teachers this year have been great. They believe in him, see the positive, and support him as well as just about anyone. But Buddy Boy got upset about something, and just lost it. The teacher had to go to the Emergency Room. Two years ago he would have been immediately suspended. Liz took him home when he couldn't be consoled at the school, but not only wasn't he suspended, we never received any official action taken at all by the school.

The subsequent 3 weeks or so have been escalating hell. Promising him grand rewards has no effect, and neither does confiscating his beloved stuffed dinosaurs. Buddy Boy has gotten violent with Liz at home, and she is covered with bruises. The police have been called 3 or 4 times by Liz when Buddy Boy has bolted from the house and she couldn't find him. Once he was found by the police running thru the underbrush in a park about a half mile from our house. His face was all scratched up from that.

We've had an emergency appointment with his psychiatrist, and took him off one of his meds (Prozac-which had in the past seemed to help with anxiety), which he felt may have been causing an idiosyncratic reaction. Two days later he erupted in class when he found out that after the chicks hatch from the eggs they're incubating in class, the chicks have to go back to the farm. He was yelling, swearing at the teachers, spitting at them, telling the teachers he was going to kill them, and for a grand finale dropped his drawers and peed all over the classroom. Liz kept him home the next day, which was yesterday.

Liz, meanwhile, is at the end of her rope. She's stressed to the max, and cries inconsolably at night. When she gets stressed she pushes people away, so it's been hard for me to try to get her back from the edge. She doesn't feel like she can home school Buddy Boy. She says that it will suck every last bit of energy out of her, and that she will not survive. I try to point out how perhaps whatever is bothering him will settle down if he gets out of school, but she is not in any kind of receptive mood right now.

Buddy Boy, for his part, is not willing or able to talk about what's bugging him. He's still perfectly verbal overall, and just says that he gets angry, and that it's all our fault. But he's adamant that he wants to stay in his school. I really don't think he's trying to get kicked out.

I have been largely protected, as I get to go to work. I've cut back on all non-urgent things so I can be home as much as possible, and have tried to manage things on the weekends, but it's not enough for Liz to rebound. She feels lost, and out of options. I have no idea where Buddy Boy will go to school if he gets kicked out of his present placement. And if he does, we'll also have to find another school for Sweet Pea. Sweet Pea has been allowed to attend the same school as Buddy Boy, which is not our home school. The school is overcrowded, and they won't let her stay if Buddy Boy leaves. We won't put her back in her home school, where the Wicked Witch of the West is the prinicipal (she's the one we spent thousands of dollars and over a year fighting with).

I keep it together because we are in the middle of a crisis, but I feel lost, alone, and frustrated as all get out. We've gone from having our best year yet, to being back at square one. I'm fairly sure that we've used up all the good will that we're going to get from the school. Liz volunteers there, which I'm sure has helped. But I know that they've got to be near their limit of tolerance. Buddy Boy went back to school today and made it thru the day without any serious incident. His regular teacher wasn't there. The substitute basically let them watch movies and play games today. Liz got to hear the retelling by his classmates of Buddy Boy's meltdown, over and over.

That's about it for now. All prayers will be gladly accepted.

35 comments:

Ange said...

I just clicked on google reader and saw you had posted. I am so sorry that you are all in crisis (including buddy boy). Spring is notoriously bad for my oldest and we just don't know why. I could suggest all sorts of things, but the truth is I don't know you or buddy boy, so they would just be shots in the dark. So a few ideas that may not apply... retreat, regain composure, anlayze. most importantly, your wife needs some respite and Buddy boy needs something to do/somewhere to go where he has some control over the situation and can decompress and feel success. Something I read recently, which I needed to hear again, is rewarding/punishing someone for something they developmentally can't control is like telling someone who is legally blind that you'll reward them for reading a print book (w/o modification) or punish them if they don't comply. Doesn't matter how bad you (or they) want to do it, they can't make themselves. I try to remember that with my oldest and his impulse control and general self-regulation... no matter what bribe or consequence we give, it's not going to give him the ability to control his impulses. So instead I have been really trying to stay even keel in my mannerisms and tone and help him problemsolve (simply) through the situations. Not always easy and not always succesful, but his reactions are much different if I don't react.

In any case, my thoughts and prayers are with you and your entire family.

Joeymom said...

Oh wow. Spring is always rough here, too- we tend to get sensory shifts and exhaustion, more acting out, and more meltdowns. Maybe its the tree pollen. Maybe its the weather shift. Maybe kids grow in the spring just like plants do. I'm sorry you're all in the middle of a bombshell all the same. Sending hugs and prayers, hoping this will all settle into better regulation very, very soon...

Marla said...

I am sending lots of prayers. It sounds like you are all under a huge amount of stress. M has been on many medications that have caused aggression and a few that have stopped aggression. Antidepressants can cause lots of difficulties for M. We tried almost all of them because of her depression and anxiety.

I hope that you are looking into a new antipsychotic or another medication to help calm the aggression and anxiety your son is having right now. Without medications our daughter would be doing exactly what your son is doing now.

I feel so for your wife. I know the concern with homeschooling and feeling/being even more trapped. I feel that way often. Possibly with a new medication your son will be doing better and all of this stress will slow way down. Since he has been doing so well I am sure things may be able to get back to normal? I hope so.

Before your wife makes any decisions I would highly encourage counseling and possibly seeing someone for possible depression. I would be a total basket case without the help I get via medication for situational depression. The stress of everything was eating me up.

We went through very similar experiences before we pulled M out of school. I can say M improved considerably once she did not have the stress of school. It was a huge lifestyle change though. I would certainly try and tweak medications and work on school a while more. Maybe a week break while tweaking medications?

Hugs and Prayers for you and your family. You are not alone in this lonely time. So many have been in your position. I know how hard it is.

I don't know if it helps at all but we have had great success with the medication Seroquel in helping with aggression and mood stabilization. Some people don't approve of that but until you have seen your child suffer and be out of control for days and months...well, you know what I mean.

Niksmom said...

Joe, I am so sorry that you are all going through this right now. I wish I had something more to offer you than my compassionate understanding and my prayers for you and your family that things settle back into the peaceful-easy groove they were in for so long. My heart aches for both you and Liz; I can imagine how my husband would feel if he were in your position. Please make sure that YOU have some support (local) in place, too, so you can continue to be strong for Liz as well.

Daisy said...

I'm so sorry to hear what you're going through. I can empathize -- more than most people know. Please remember that Buddy Boy's verbal ability doesn't mean he has the ability to process the emotions that produce the words, the anger, the frustration. If we lived closer, my husband and I would be right there at your sides. It's so tough, even for strong people like you and Liz.

S.L. said...

Really sorry to hear all this. Your family will be in my thoughts & prayers. Hoping things start going smoother. I wish I had some incredible advice to offer, but I do not. We've had our own experiences, where things appear to be going to so well, and then it's like an explosion occurs. Stay strong, and know that many of us are thinking of you guys and holding you close in prayer. Take care.

Ange said...

Just thought of something that is a big shot in the dark...but... our district does MAP testing in April, and it is VERY disruptive even for kids not having to do the test... schedules are changed, people are different, stress probably radiates from the pores of the test administrators and school staff... it's also IEP season (substitutes for teachers and therapists) and ditto on the stress floating around everywhere. My oldest absorbs stress like it's radioactive (just like me) so I thought I'd throw that out there. And if the threshold is already high, then seemingly "little things" can be the straw that broke the camel's back (or whatever that saying is).

Foresam said...

http://health.groups.yahoo.com/group/Autism-Mercury/

Go see what Andy Cutler has to teach you.
Delete my comment if you like but save the link and save your kid.

Lenora said...

Our son's anxieties really escalated around that age too. The psych thinks it had to do with puberty and growing awareness of how he was different from other kids. We were pretty lucky with his meds though. Fluvoxamine (Luvox) was the first one we tried and it worked well.

Good luck with the rest of the school year. According to my husband the teacher all his neurotypical kids are squirrelly because testing is over. Maybe the classroom is a little crazier now?

isles said...

It's hard just reading about all this, I can't imagine how much harder it must be living it. My best to you and the family. People are rooting for you.

kristina said...

First, sending a big supportive hug to Liz. And to Buddy Boy and Sweet Pea and you!

I don't think this will make anyone feel better (well, maybe.....), but Charlie once bit an aide on a certain part of the female anatomy and on the playground with the whole school around (that's in the town we used to live in).

What's the school doing to help him? I feel like an emergency meeting of the Child Study Team is needed and a new Behavior Intervention Plan developed. And does Liz have anyone to help her during the day---especially to figure out some sort of strategies to address aggression? I'm sorry if that sounds kind of clinical----when Charlie was being very aggressive (when he was the same age as Buddy Boy is), we needed an outside behavior/ABA consultant to look at the home and school situation.

A side note: Prozac upped Charlie's aggression. Still thinking......and sending more hugs.

David N. Andrews MEd (Distinction) said...

FS: "Go see what Andy Cutler has to teach you.
Delete my comment if you like but save the link and save your kid."

You'd be laughable if you weren't so thick.

Alyric said...

Hi Joe

The experts have said the necessary. This is just a cyber-hug for you and Liz. And just a thought about Spring having sprung and it nearing the end of the school year. Just thinking - schools are what - the worst possible environment for spectrumites? The stress is cumulative isn't it - it sort of rises and rises until even the simplest thing can't be coped with? If there isn't a specific trigger, can you just keep a lid on things until the Summer brings a decentish amount of respite?

jypsy said...

Sorry I have nothing to offer but my best, warmest, most positive thoughts. You all absolutely have them. Take good care....

Club 166 said...

Thanks to everyone who responded, both on and off the list. I feel better already. I know we'll get past this rough patch, and just hope that Buddy Boy doesn't burn too many bridges in the process. But if he does, we'll just have to start building all over again.

As I woke up this morning, I realized that perhaps this all could be put off to seismic activity. :)

I realize that a 5.2 earthquake is nothing to those in California, but it's a bit unusual for the Midwest. Maybe now that the quake and the aftershocks are over, things will settle down.

Joe

kristina said...

Now you've got me thinking about that New Madrid fault!

But beware of correlations.....

mumkeepingsane said...

I'm so sorry you're all going through this crisis. I can identify with Liz and send her a great big cyber hug. I have what I call 'primary caregiver meltdown' that comes out in times like these.

It's so hard when we just don't know what to do. That feeling of helplessness can send you to the depths of despair. You WILL come through the other side. Sending many prayers your way.

Emily, as some know me said...

Joe, spring has everyone in an uproar here, too. All the kids have lost it and are having extra-hyper, extra-aggressive behavior around here--typical and neurotypical. I'm sorry about all this stress and I feel for you and for your wife--and for your son. Someone mentioned the ABA specialist or someone else coming to your home to help devise home-based methods for handling some situations. Just knowing that there is support like that can lift a load...does your district offer this at all? Is there any parenting group Liz can get in touch with there, a group of parents of children on the spectrum? I know several mothers here who are in such groups, and they find this kind of support and similarity of experience to be psychically very helpful. One has even started leading a group therapy. She's the mother of a child adopted from Russia who has significant issues--major, injurious aggression being one of them--and she has found the group support enormously helpful.

If that's not available, an online group might provide an outlet. She needs a break and an outlet and some path to recovery and regrouping.

At any rate, I do hope things start looking better for you all.

Club 166 said...

Update:

We got thru Friday and Saturday without any major meltdowns! Buddy Boy is still extremely resistant to any changes or transistions, but we haven't gone 48 hours in weeks without wildly atypical behavior, so maybe things are looking up. Keep those good vibes and prayers coming!

The local online community (as well as most "Autism families" we know) is heavily "curebie" centric. We don't really socialize there. And Liz isn't one for online socializing anyway (she only talks to people online that she's actually met-what's up with that?).

Here's hoping that we can all regroup as we head into another week.

Thanks again to all.

Joe

Club 166 said...

Oh, and Sweet Pea was in a better mood today, too. Earlier this week she drew a little two frame "cartoon" that broke my heart. In the first frame she drew all of us, with Liz, I, and her all looking sad while Buddy Boy was "wild". In the second frame she drew the three of us with happy faces and Buddy Boy behind bars in jail. I guess she keyed off of the police coming to help search for him. That's the first time she's ever drawn anything that wasn't all smiling and upbeat. But today the only thing that bothered her was the fact that I kept beating her at the game "Trouble".

Joe

dancingmom said...

New reader, just wanting to pass on good vibes and prayers to your family.

karen

Club 166 said...

Thanks again, everyone.

@dancingmom,
This is not the post that I would pick for a new reader to read. I'm not usually this down and negative. Hope you come back when I'm back to normal.

Joe

Ange said...

Joe, there is a behavior solutions group in St. Chas County and it is free through a grant program...not sure how far the coverage area is or maybe your local SB40 board (ours is called DDRB) offers something similar. We also qualify for in-home respite through the same place. Having someone come to my house and basically pull me from the fire made a BIG difference. There was a lot of negotiation and compromise (because I didn't agree with some of the methods used or behaviors that they wanted to extinguish). But we made it work, and it literally saved our family from crumbling two years ago. I just wanted you to know that you can make the services work, even if you don't think your principles/priorities are the same. For example, I refused to do certain things and asked if we would still have success. They said yes, but it would take a lot longer. I said that it was worth it to me for it to take longer. I was in for long term growth and development so Bubba would have more control and independence in the future. I didn't want a quick fix (at any cost). Actually, the methods helped me change my reactions, my planning, prewarning, all sorts of things that made transitions not so bad for Bubba. A lot of it changed and molded ME and OUR environment. Then Bubba had success after success. As you know, I am not a cubie, but have "friends" everywhere on the parent spectrum, and I take and give what I can. ;)

Oh, maybe look for a sib shop for Sweat Pea? Or ask that she be able to speak to the school counselor (if you have a decent one). I know of some little girls that this has helped when they start struggling with their feelings about their brothers.

Bink said...

I just now read this. I am thinking of you and your family. I especially think of Liz. Please tell her that when I surely do my trademarked "up at 2 a.m." thing in a few hours, I will be sending good mothering thoughts her way as I wander the house.

S.L. said...

Glad to hear things may be looking up. Still keeping you all in my thoughts & prayers. On Sweet Pea's drawing...it's good that she's expressing those feelings--but I know how hard it can be to see such things. My eldest has verbalized similarly & drawn pictures too. The most recent was a "bubble graph" which she had learned to do in school. It had her, with how she was ("nice," "friendly," "loves my sister," etc.) and her sister ("sometimes nice," "shy," and "doesn't like me"). It made me sad to see it, and to think she may feel her sister doesn't love or like her. We chatted about it. She's also brought home the "I feel lucky because I have an autistic sister" shamrock...so, I guess they go through those many emotions, but then rebound (better than us adults, I suspect). I know it doesn't help much, but just wanted to let you know I've been there too. People always tell me that my eldest's experience will make her more compassionate and caring. I think this is true. You all hang in there. Take care.

Anonymous said...

De-lurking. I enjoy your blog. Please hang in there. I am kinda like your wife. I do not blog and only read a few of them. After our prozac nightmare, the psych. recommended a book called, The Explosive Child. It helped. Prayers and hugs to you all. Sincerely, diane G.

Bonnie D. said...

I really felt bad for you and your kid after I found this post. I hope everything works out. It's so hard to get these guys in the right program sometimes,and it's not always the kids fault. I firmly believe the responsiblity of the school is to set a child up for success no matter what it takes. Sadly, this doesn't seem to the same thought process of the school systems.
Good luck and God bless.

laurentius rex said...

Io sono il cattivo mi pensa

Tuco Ramirez was the most developed and complex character in the movie as I recall and if you don't believe me go ask Christopher Frayling.

There is a guy in this blogosphere who posts with a big white hat, I am more in tune with the atmosphere or the west, the west is always the best (ask Jim Morrison) and many a Cowboy hailed from Wales, indeed some of the most famous outlaws.

It is an old Celtic concept of the land beyond the setting sun, Hy Brazil call it what you will where a mans gotta do what a mans gotta do.

I am glad I survived my past, I'd hate to relive it in our so called modern and civilised days.

I don't think people would believe what was normal back in my days, and yet it cut both ways unfortunately for what I could get away with, well so could my bullying adversaries.

Nobody is nice and well behaved all the time, for I certainly am not.

Liz Ditz said...

Oh, dear dear dear. My thoughts are with all of you.

I am glad the last few days have been calmer. The spring does seem to unspring kids, NT and otherwise.

I have this mental image of the rising tide of anxiety flooding schools during testing season. Kids who have sensitive anxiety meters are the worst off.

I strongly recommend the resources at the Center for Collaborative Problem Solving.

Children Do Well If They Can

The CPS model -- which was first articulated in the book, The Explosive Child -- proposes that challenging behavior should be understood and handled in the same manner as other recognized learning disabilities. In other words, difficult children and adolescents lack important cognitive skills essential to handling frustration and mastering situations requiring flexibility and adaptability. The CPS model helps adults teach these skills and teaches caregivers and children to work toward mutually satisfactory solutions to the problems causing conflict.

The other motto, of course, is All Behavior Is Communication.

Lee said...

Joe,
Our thoughts and prayers are with you. It has been an extremely difficult few months with MJ also. He had a two week stay in a local pediatric psychiatric unit in February, another ER stay of 27 hours two weeks after that and numerous med changes since. What we have found to help is a weekly or every two week e-mail conversation on our observations of MJ's behavior that goes to his psychiatrist, psychologist that he does social skills group with, the APRN who is the executive director of the therapeutic center he goes to two afternoons a week, the social worker at school and the clinical social worker that sees him for individual therapy. Everyone replies to everyone so everyone knows what behaviors are seen in different settings. This has proven to be most helpful in med changes and keeping consistent strategies in place throughout his day.
Hang in there Liz. Take time for yourself when you can. Treat yourself to a pedicure or a massage (Joe-Mother's Day is coming up!)
Lee

kristenspina said...

I just stumbled onto this post and am hoping beyond hope that all these days later, you have found some relief.

What a difficult thing to read, but bless you for posting it. You are not alone, not by any stretch, and I will keep you and your family in my thoughts in the the days and weeks to come.

Spring is a difficult time of year, despite the inherent beauty of it.

Club 166 said...

Thanks once again to one and all.

We read "The Explosive Child" about 3 years ago, and I used it (somewhat successfully) to beat a little sense into those who were ruining his life in Kindergarten. I am a big fan of Ross Greene.

We've had a few more "bad" days (requiring afternoons out of school, but not as physically violent as before), and a couple of days where Buddy Boy has managed to stay in the class for the whole day.

Amazingly, the thing that seems to be working (at least for the last two days, who's to tell?) is the most counterintuitive-the school has withdrawn his one to one aide in the afternoon. Liz told me this last night and I was like "What? Doesn't he need someone now more than ever?". Liz was initially opposed, but willing to try anything (settle down, Foresam, I meant anything behavioral) to change the situation.

Evidently the aide had been using an "anger meter" with Likert scale like pictures on it for Buddy Boy to indicate if he was angry. Buddy Boy then got to go to the special ed classroom (presumably to chill out for awhile, then to return). Basically, Buddy Boy was just burrowing into a blanket when he got there, and stayed like that for one to two hours, at which point he got even more upset that he had missed so much class.

I'm still not sure that taking away his afternoon aide was the best thing, but I'm not going to argue against it if it's working. Once he's better able to maintain himself in the class we can worry if his ADHD is having him just "space out" when left by himself without an aide.

For now I'll be happy if he just doesn't get kicked out, and can maintain some sort of equilibrium until the end of the term. Then we'll have a couple of months to sort things out a little better.

I know Buddy Boy isn't totally back to his regular self yet, though, by what happened last night. The night was going well. Buddy Boy played with his Nintendo DS, and even surrendered it at bedtime without too much fuss.

Seconds after leaving his room, he was screaming. Had mom already washed his pants (she had)? He started screaming how she didn't care, and was evil. Finally we got out of him that he had "invisible plans" in his back pocket, and that they had taken him a year to make, and now the water in the washing machine had dissolved them. He was kicking the walls, screaming bloody murder, etc. After about 10 minutes (it seemed much longer, but was only about 10) I was able to distract him by talking about how we could start setting up our garden this weekend (This last weekend we went to a lawn/garden center and got some fencing and stuff).

Joe

Ange said...

We saw much more "escape" behaviors when Bubba had a fulltime aide. We have been working toward less para time, and now that we are there, I am scared that he is just going to be withdrawn and inattentive. But they'll be happy because he is "behaving."

Shawn said...

Joe,

I hope you've seen some improvement or found some additional strength to get to through this crisis.

We've lost a few school placements and the stress leading up to the change was incredible. I fought it, emotionally anyway, but eventually an out of district placement turned out to be a better place for MJ. It was a stressful change, but MJ's better for it. I'm not advocating anything in particular or offering advice but just relating that, for me, the stress associated with the change held me back from accepting it.

I know how difficult it can be in the midst of crisis. As Lee commented earlier, our thoughts and prayers go out to you. We've been one of those families "in crisis" the past few months and know how hard it can be.

Mrs. C said...

Joe, I'm so sorry to read this. I really liked browsing your blog and hearing someone whose story is so similar to our own. I was glad to see I'm not alone but sad as well that things have to be this way.

G is autistic and in public school. It works for him for the most part, but I want you to know that he thinks I'm a dictator worse than HITLER when I take his Nintendo away. He'll scream and bang the walls and howl that he IS BEING ABUSED! (I keep waiting for the social worker to show up or something, but no one has yet. Which makes me very glad... but then I think... wow, what if someone really WERE being abused and howling like that and no one came??)

Anyway...

We found with Elf (almost 8 now) two years ago that it was *easier* to homeschool him than to go to constant meetings and hear about his "poor choices" or have to pick him up all the time at school with no notice. They kept locking him in a closet AFTER he misbehaved instead of giving him a smaller class and an aide like I thought he needed. You know, 27 kids and no aide in a class is askin' for trouble. Just begging for it.

I have kids in both situations (public/homeschool). You just do what works for your kid THAT year or that month.

Hope things have gotten lots better since this post.

PS. Thanks for commenting on my blog! I remember we have chatted before.