Why do I have swings in levels of hope for my son? Is this the fate of CD parents?

[Otto von Bismark]

My son has CD. He has history of killing animals, lying, pretending to "not know" in order to get out of trouble or explain away rules he is breaking. He also has deviant sexual history. He is only 13. He also is on autism spectrum, so some have said that autism is getting in the way of him understanding things -- and getting in the way of proper testing. This is all new for us, for the most part, since he hid a lot of it until the past September. We thought it was autism spectrum alone.

His last testing showed borderline IQ, which I know people here have so kindly addressed. He also is extremely sensitive to medications. Goes to special school that is wonderful. Okay, background is out of the way.

So, we try a new medication -- Intuniv. We have completed 3 days. On his first two days on it, he came home from school and reported that he had "his best days ever." He got all his work done. He felt better. He was a wonderful student who respected his teacher. He was nice to other kids. He felt hopeful, but very tired.

My hopes that we found "THE THING" that would help him, started to soar. I had 48 hours of feeling comfortable and safe, with a very slight hope that things MIGHT be okay some day and I was so happy that he met with success. Thinking, that if he meets with success sometimes, he will start feeling better, and things will look up for him.

I get a call from guidance today( yesterday, at this point, but I still haven't gone to sleep, because last time he got this busted he tried to kill himself)
saying that he has had the worst week of his career there. All week he has sassed teachers, bullied a very sweet, defenseless kid, gotten in the middle of every kind of drama he could, got in a teacher's face aggressively, and was being placed in suspension, with request for us to sign a aggression contract, which states that they can give him back some of what he is dishing out ( within safe constraints).

I wondered if it was the Intuniv, but he started this before he even had first dose, and has been working up to it for weeks, it seems.

He totally lied to us. Lied through two hours of therapy about how much better he was feeling. Got some levels of "reward" for his lies from us, because we were treating him "better" in his eyes.
He said he bullied the kid because he had post-nasal drip and was making snarfing sounds -- so he called him a retard, and worse.
He didn't care that he lied to us, he just did it to get what he wanted at that moment. He was not sorry that he bullied the kid.

It is more complex than I am writing it...there is a lot of emotional stuff in there. I knew we were in trouble this morning when he woke up and broke rules right off the bat

• showering without asking -- we are a one bathroom family, and he would go in shower and masturbate forever...he has to ask before showers -- he knows this. His sisters take morning showers, he takes night ones to stagger schedule.
• peeing standing up at toilet, because he pees all over the seat and floor...he knows he has to sit down to pee....just like my husband does. This is for years.

When we see even these small things start to go, often times it is an indicator that EVERYTHING is falling apart. I noted it, asked him about it -- his answer was that "he felt like he was ready to do those things without checking with us" and that is always an uh-oh. I got the phone call two hours later.

Oh, I just found out today that, a few months ago, he also locked that same kid (whose sisters hamsters he killed! This family now HATES us) in the bathroom ( no natural light) and when the kid screamed for help, he thought my son had left him alone, it turns out that my son had stayed in the bathroom to hear him scream, it seems. The poor kid has colitis and is often stuck on the john, so he was really stuck and frightened.

He also gave super spooky eyes to my daughters last weekend, before the Intuniv, staring them down in a threatening way, they reported. Also, before the Intuniv, his grades were all dropping, several to Ds.

So, is this the diagnosis swing -- maybe it's not really CD. Maybe it's just autism. Maybe someone made a mistake. Maybe it will get better. Maybe we won't need Residential Treatment Facility (RTF), which we don't even know how to get, or how to assess readiness for, maybe it is all a bad dream. things could be looking up, right?

Then another phone call.

He isn't far from being kicked out of that school. The next option is public school for emotionally disturbed kids, where he will get eaten alive. He only bullies the weakest possible kid at school, because he himself is a very easy target for bullying. Was physically bullied in public school in 3rd grade before we moved to special school.

I am torn between feeling terrible because he doesn't understand what is going on, and feeling like he knows EXACTLY what is going on and he is snowing all of us. I truly cannot tell.

How can I tell which it is? More confused than ever.....

 

[Malika]

I am so sorry to hear about this situation. It must be very painful. You have done all that can and it is out of your control... what more can you do? I just don't have the knowledge or experience that many here have to give any concrete advice but I would imagine you have to meet with the psychiatrist sooner rather than later to review the situation. How long might it take to expect some effect from the medication?
Bit concerned about this "aggression contract" - can you explain a bit more what it involves?
I'm sorry not to have anything more useful to say. My heart goes out to you. Others will have more practical suggestions and guidance.

 

[Otto von Bismark]

Contract says they can:

• raise voices back (for effect). My son is yelling at them.
• restrain if needed (if he is physically violent first)

• physically redirect child
• place child in safe place ( chair or floor) to calm down
• call police to help assist if necessary

It can take a few weeks for medications to work, I have heard, plus we are at low dose and need to titrate up. Who knows if it will help, anyway.
Also, we called therapist and she is on it. Going to school tomorrow, if possible, to sit in observe, via video cameras.

I cannot sleep. Am doing research on Residential Treatment Center (RTC) in my area, just to see what I can learn. Have no idea how to pay for this stuff.

Thanks for your kind words.

 

[DammitJanet]

I am so sorry. I am one who does believe that CD can and does fully show itself in children. Some here will argue with me but the DSM agrees with me. I believe my son showed signs of it as a teen and all the professionals let us down by just focusing on bipolar and didnt address the CD. I believe that was to his detriment. Some say there are no good treatments for CD but there are. Everyone in the child's life has to be on the same page as far as how he is to be treated and managed. There can be no triangulation. This can be very hard to put into practice. You really need to get a good therapist who knows how to work with a child who has CD.

 

[InsaneCdn]

Can I toss a really far-out idea out there somewhere?
What's the chances your difficult child has some form of attachment disorder?
There's a good, fairly recent post out on this forum, by Buddy, that looks at "insecure attachment".
Attachment disorders are a whole range - from fairly mild to extreme.
If existing approaches are not providing results... is it worth exploring this?

The challenge is, if an attachment disorder is indeed in the mix, then the the things he - and you - need are totally different than if he's CD. This would have to be explored with a therapist who has very significant experience working with kids who have attachment disorders. The rest of the tdocs and psychiatrists don't have a clue.

 

[TerryJ2]

Yes. That's my gut reaction to your subject heading.
Every day is different. We go up, we go down, right along with-our kids.
Boy, your son is way out there. I would not give up hope on the medication. It is still new.
I love the idea of the therapist watching via video. Awesome.
Clearly, some part of his brain is just not working. I am sorry he is so old and is still showing these behaviors. I was hoping he would have made some permanent progress.
I know what you mean about the meltdown when he is confronted with-his behavior. These kids just cannot deal with-it. It is way too stressful. Their entire world falls apart, and instead of crying, they go berserk and get violent and spiral out of control.
You are doing all you can at the moment, and I applaud you.
All I can say is, appreciate the calm periods even if they are false; you need the balance and peace.

 

[TerryJ2]

P.S. My son had said he wants to kill himself, too, after huge confrontational episodes, and once he starts to calm down, I will ask, how will you do that? Gun? Pills? Jump off a bridge? He has no plan. He knows guns are illegal, he doesn't know which pills to take, and he's afraid of heights. (I had to keep the little smile off of my face when he answered each question. He is so literal and still so young, in his mind.)
It's the FEELING they are talking about, so maybe that's what your son is getting at. Unless he has a history of actually following through on plans. It seems to me that he's more "in the moment" and by the time he got his act together to kill himself, he'd forget and be onto to something else. Killing the hamsters was spontaneous, right?
Your son is very young, very immature in his mind. He's got the body of a young adult and the emotions and self control of a pre-schooler. I hope if you keep that in mind, it will help. Many hugs.

 

[Otto von Bismark]

"Can I toss a really far-out idea out there somewhere?
What's the chances your difficult child has some form of attachment disorder?"

I will have to read about it. He is third baby, my last, born full term to me, during marital strife. Spent 4 days in NICU, but then was home with me for a long time. My husband and I were on the rocks when he was 4 months old, and I had a 2 year old and a 4 year old. I was divorced when he was one. I was really into being there for my kids when they were little. Drawing, games, stroller rides, park, play doh, reading together, crafts, blocks....all that - I did it. I was there for it.

He had a cleft palate, surgery at 9 months. We stayed in hospital with him. All therapies were with me present.
No day care. Sick kid ...multiple aspiration pneumonias, though.

When I couldn't make it on my own, I moved in with my parents, rather than put him in day care. I remarried when he was 3 1/2, we added two older stepbrothers into the mix, but they lived with us and were really good boys. Nice to him, nice to their dad, and me(stepmom), and my daughters. I even work from home, after a brief attempt at working outside the house. Couldn't do it.

Very stable home. Family dinner table every night. Slurpees and movie night every Friday night. For years.

He did 2 day or 3 day a week preschool from 9 to noon when he was three. He got kicked out of two of them for biting. I was suspecting autism spectrum at this point, because he got really, really mad when he couldn't communicate. He had a form of echolalia and didn't converse well until he was past five. We got off gluten at five and he made instant, impressive progress, but is speech and was diagnosed with Asperger's by the school in kindergarten. There always seemed to be something .....missing with him, though. I knew other boys with Asperger's and he didn't act the same way. I suspected intellectual disability around then, but who knows.....

He does have big sense of loss with his father, who lives in another state. They also don't have a close relationship when they are together. My son talks about having a longing to have a good relationship with his dad but it doesn't seem to work out. I know my son was terribly upset when his dad had another son some years later when my difficult child son was 8. It was the first time when I remember him acting upset at some relational/social thing.

Just looking it up --
•Neglect -- none whatsoever
•Abuse -- none whatsoever from me -- he says his stepmother scared him and wasn't most appropriate parent.
•Separation from the primary caregiver -- summers and some Christmas holidays, always to Dad, and with sisters, to same house.
•Changes in the primary caregiver -- divorce and out of state visitation, but it was always between same two people.
•Frequent moves and/or placements -- he moved with family from a house to grandma's house with mom and sibs when he was 1 -- where we always visited previously) -- to new husband's house in same town when he was 3, to newer house in same neighborhood when he was 5. Kept same friends, same family members close by.
•Traumatic experiences -- two surgeries, difficult older sister, very tough time fitting in during visitation with father's family
•Maternal depression -- maybe in the beginning, when I was broke and on welfare with three kids under five and one very sick one...., but it was situational and mild and didn't prevent me from being attentive to kids.
•Maternal addiction - drugs or alcohol -- none whatsoever. Sometimes I wished, lol.
•Undiagnosed, painful illness such as colic, ear infections, etc. - cleft palate, surgery, ear infections every two weeks until tubes at nine months, pneumonias, hernia repair....all before age 2.
•Lack of attunement between mother and child -- I try hard, am always there. Try to play board games, connect emotionally, do activities together. I try....but it is hard to connect to him. He doesn't relate well, so there is small reward for doing it, but I don't give up. I fake it sometimes....I don't really want to hear about a Harry Potter Wand for the 800th time, and I get tired of him declaring things all the time and never asking about anything other than stuff that pertains to his needs or desires, but isn't that normal as a parent of kid with autism?
•Young or inexperienced mother with poor parenting skills -- experienced mother with very good parenting skills, had him at age 29.

What do you guys think? Insane CDN, you may be an intuitive genius. I look at all the red letters and freak out, thinking I gave him a crappy life, now. Could he be sensitive enough of a kid to REALLY react to parental visitation? There is the autism in the mix, making things hard to wade through. I just don't know.

 

[Otto von Bismark]

P.S. My son had said he wants to kill himself, too, after huge confrontational episodes, and once he starts to calm down, I will ask, how will you do that? Gun? Pills? Jump off a bridge? He has no plan. He knows guns are illegal, he doesn't know which pills to take, and he's afraid of heights. (I had to keep the little smile off of my face when he answered each question. He is so literal and still so young, in his mind.)
It's the FEELING they are talking about, so maybe that's what your son is getting at. Unless he has a history of actually following through on plans. It seems to me that he's more "in the moment" and by the time he got his act together to kill himself, he'd forget and be onto to something else. Killing the hamsters was spontaneous, right?
Your son is very young, very immature in his mind. He's got the body of a young adult and the emotions and self control of a pre-schooler. I hope if you keep that in mind, it will help. Many hugs.

Terry, this is our experience, too. His suicide was ideational. Kept thinking about it. Obsessed about it every time something was tough for a few months. Went out of class 5 time a day sometimes to go to counselor because he was thinking about it.

His one "Attempt" was to put a knife up to his throat, but he said he knew he could never cut himself. He was too afraid. He has no other organizational ideas. I have asked him. I took the knives away for a few months but they are back. Unless he can overdose on echinacea and homeopathy, he is pretty safe with pills, although today I did put our tylenol away in the safe again.

I still feel for him....to feel that hopeless that you want to die. At 13? Super sad and I want to fix it.

 

[DaisyFace]

Otto--

(((hugs)))

I wish I had some words of wisdom...or that there was something I could say to make it better. I am trying to accept that mental health is a "process"...and not something that can be fixed.

As far as the attachment disorder - that label has been considered for my child, too. And we don't have any of the "red flags" for parental neglect either. I am beginning to think that brains that are wired differently (whether due to autism or damage or chemical imbalances or whatever) have trouble "attaching" all by themselves....regardless of parenting. The ability to truly connect with another human being may simply not be there.

Why do you have ups and downs? It is because you are human...and you have hope....and you will never give up on your son...even though sometimes it seems so hopeless.

(((hugs))) again...

 

[buddy]

and was being placed in suspension, with request for us to sign a aggression contract, which states that they can give him back some of what he is dishing out ( within safe constraints).

I would never ever ever ever sign such a contract. Deciding on a behavior plan before a really good assessment including a functional behavior assessment is done goes against federal guidelines/mandates.

The law says that a POSITIVE BEHAVIOR PLAN must be developed based on the analysis. This idea hits my gut in the worst way. It is your choice of course, you know your child but I simply can't imagine that this is even legal.

They always have the right to do restraint or guide him away if there is a risk of imminent harm. If that is done more than a certain amount they MUST call for an IEP meeting and see what skills the child needs to learn to help them to cope better. It means the IEP is not adequate.

I am so so sorry for his struggles and it is AWFUL to hear your child is doing things like that. They need to realize that their doing those things will not improve things for him and with his autism, and his pattern of imitation (sounds like not only the echolalia from before but he picked up some of the bully behaviors he experienced).... this will only up the problems.

Put in writing that you want a functional behavior analysis to look at the causes of these behaviors. If they only stick to the same old, attention seeking/escape, etc..categories when they do the analysis, you are working with an amateur. They need to look at internal and external triggers including a NEW medication. After the whole evaluation is done then the team must come up with skill development goals and positive ways to improve the behavior. If he already has one, it is not working and they need to do it all over.

It is likely a whole combination of issues and that is why we are always on such a rollercoaster..... ed. program can be good but medications are off. medications are good but they are not following through with positive behavior plans.

Look no matter the diagnosis, and that is huge to investigate for sure...

there is a problem at school and they HAVE TO handle it appropriately.

 

[DDD]

Were you able to get a neuro/psychiatric evaluation done? If I recall during his crisis there was talk about it. First of all please know that I am truly sorry you are facing such complex issues. Like everyone else here I am no expert, just an experienced parent. Truthfully I think you are dealing with another diagnosis. here. It may just be a supplemental diagnosis. but looking from the outside it sure seems like there is a missing link. Impulse control problems I have lived with for almost fifty years of difficult child parenting. Intellectual lag I have lived with. Asperger's I have lived with. Conduct Disorder I have lived with, too. Some of your son's behaviors fall into those categories but it sure sounds like he has displayed cruelity and pleasures in the results.

Your parenting skills sound above the norm. There is no apparent reason for you to have self doubt on what you may or may not have done. He has had a devoted family but he is displaying more than the defiance of CD. My gut says there is an important missing link that needs to be identified. Sending many honestly caring hugs your way. DDD

 

[BusynMember]

I not only believe CD exists, I lived with it. In this case it was called Reactive Attachment Disorder, but it's pretty much everything CD is and your son does exhibit these things...and I'm not certain there is much you can do. And, no, I don't believe it's your fault in any way.

To address the issue of OUR mood swings (yes, I think we all have them), it is because difficult child's tend to cycle behaviors. They will have two good weeks and we'll think, "He'll be ok! I know it!" Then the other show falls and we are devestated. So it takes us on a mighty roller coaster ride as the behaviors goes up and down.

I am so sorry you are going through this. My best advice is to make **** sure your daughters are not alone with your son. EVER. And I'd be careful to make sure he can't get into their rooms at night too. I think the best you can do is to anticipate trouble in advance and try to stave it. An evaluation can help you understand the issues more. I do not know if can solve the problems. You are doing and trying the best you can.

As for the autism, I do have a son who is on the spectrum and antisocial behavior (mean antisocial behavior) is not part of it. If anything, autistic kids tend to be the victim. So that's the diagnosis I'd be questioning, although he CAN have both with the CD overpowering the autism. I personally (and I could be wrong) don't think attachment disorder is a part of this. You were there. You nurtured him.

I'm so sorry for your pain. I felt it so I know what how deep it goes.

 

[Otto von Bismark]

Were you able to get a neuro/psychiatric evaluation done? If I recall during his crisis there was talk about it. First of all please know that I am truly sorry you are facing such complex issues. Like everyone else here I am no expert, just an experienced parent. Truthfully I think you are dealing with another diagnosis. here. It may just be a supplemental diagnosis. but looking from the outside it sure seems like there is a missing link. Impulse control problems I have lived with for almost fifty years of difficult child parenting. Intellectual lag I have lived with. Asperger's I have lived with. Conduct Disorder I have lived with, too. Some of your son's behaviors fall into those categories but it sure sounds like he has displayed cruelity and pleasures in the results.

Your parenting skills sound above the norm. There is no apparent reason for you to have self doubt on what you may or may not have done. He has had a devoted family but he is displaying more than the defiance of CD. My gut says there is an important missing link that needs to be identified. Sending many honestly caring hugs your way. DDD

Yes, we did. A big fat wrench got thrown into the whole thing. I took difficult child to developmental peds doctor that the neuropsychologist doctor suggested and she said the tests were complete bunk....the scores of some couldn't exist with the scores of the other. Told me to retest. Well, we are out of money, so we can't. Two other psychologists, one a neuropsychologist -- and our psychiatrist all said that the testing didn't look right at all. So, we actually don't know if his diagnosis are right. I think I listed them in another thread that I started about test results. I will see if I can find them and post here.

Thank you everyone.

 

[InsaneCdn]

malpractice? or at least, if you have several professional opinions that the testing is invalid, then that tester should be funding a second opinion.

 

[DDD]

Do I understand that correctly? The neuropsychologist recommended that you pay over a grand for a full neuro/psychiatric examination (six or eight hours of testing) and then your professionals, including the neuropsychologist, agreed that the testing was worthless? OMG. I've heard alot of weird things but I think that takes the cake.

Just sitting here thinking thru that scenario it sounds like you all are shafted and difficult child is vulnerable. I doubt the examiner would refund your money and obviously you wouldn't want the same tester to do a freebie. Yikes. I'm sorry. Really sorry. Hugs DDD

 

[StressedM0mma]

Otto, I understand completely about the rollercoaster ride with our difficult child's. It is so very hard. My difficult child is on an up swing right now, so we are having a relatively good week. But, I am often waiting for the other shoe to drop. I think alot of us are. I try very hard not to look to far forward. I am so sorry that you are going through so much with your son. It is so hard to see them hurting and feel helpless. I hope that you can find the help for him that he needs.

 

[Otto von Bismark]

Our psychologist is meeting with us and school tomorrow. She agrees with some of you here, and my husband and me about something not being in place for him at school that he critically needs. She also agrees that the aggression contract is not good in this case.

God bless her advocacy, and God bless you guys. Thank you for your help. I never liked uncharted waters. I'm kind of a mappy person. This is all new and your input is so helpful.

 

[DDD]

Fingers crossed that the meeting goes well and helps difficult child. DDD

 

[buddy]

Great news, and if the prior testing is invalid for some reason... well that happens... can be reasons even with difficult children that it happens... but the neuropsychologist that presented the results did not tell you that so THAT is a HUGE problem and re-testing should not be at your expense. (should not but of course who is going to admit that , ugg)

IF so many other professionals can look at the scores and see that there are patterns of invalid responses, it sure would be the right thing to help you get new testing or refund your money, but ??? SO so sorry.....