Can take this another day

[stressbunny]

I'm having such a hard time lately. Our older difficult child (19) has flunked out of college and has an entitled, narcissistic attitude through the roof, and our younger difficult child (12) is on the autism spectrum and presenting some extremely challenging behaviors.

This post is about the younger one (Bubby), though, as our older difficult child is not living at home right now. As I mentioned, he has an Autism Spectrum Disorders (ASD), and he is also ADHD and quite difficult (stubborn/uncooperative/disrespectful). Lately, it has become so bad that our marriage and health are suffering. Basically, every single day, we are faced with combative behavior from our youngest. These episodes can last for hours at a time, and there is no way to reason or discipline, it seems.

Case in point: About a week ago, Bubby decided to clean his i-pod with Windex. He didn't intend to harm the device, but the Windex seeped under the screen and caused damage. Fortunately, I had purchased the protection plan with it, and the i-pod was replaced. However, while his games and apps, etc. are able to be transferred to the new device again, any upgrades for these games that were purchased previously, cannot. Bubby blames my hubby for not telling him not to use the Windex. So, he writes up "tickets" on sticky notes, charging us money for our "crimes" and sticks them all over the house. He really believes we should pay him the fines, which, of course, he will then use to purchase the upgrades he lost when the device was replaced. He gets stuck on this and cannot shift gears. He perseverates for hours at a time, yelling and blaming and talking sassy. If he is upstairs, he bangs hard on the floors, admittedly to upset us. Otherwise, he follows us around crabbing and/or screams in another room while we are preparing dinner or talking, etc., generally just making everything miserable. Every day and every night he goes on and on and on about how this is all my hubby's fault (it's not, because he didn't allow or even know that Bubby had used the Windex until after the fact). We tell him to put the sticky notes back and to stop blaming and be happy that he has a new i-pod and all of his games, but we can't afford to purchase all new upgrades right now (maybe a little at a time for good behavior). He wants what he wants right now! He refuses to put the sticky notes back and refuses to stop ranting. Last night, this went on for about four hours. Then, this morning, he started again with me (my hubby is at work), and no matter what, he won't stop.

If I ignore him, he continues to put sticky notes all over the place and yell out loud periodically. He has also drawn an invisible line in our living room, which he says I cannot cross, and when I do, he screams at me. I gave him a choice that he could either stop with the sticky notes and blaming or give up his i-pod for an hour. I set the timer for ten minutes, giving him ten minutes to throw away the sticky notes and drop this. Of course, he refused, and the timer went off while he sat there. So, I told him he would need to hand over the i-pod for an hour, and he refused saying he would call the police if I try to take it from him. He will fight me physically, I'm sure. He has hit me many times, and he is getting bigger, so I'm not sure it is a good idea to get into a physical battle over this at this moment, when he is off the deep end angry. So, here I am on this board, desperately seeking understanding and advice. Do I go forward with physically fighting him to take the i-pod away? Do I try some other sort of consequence? NOTHING really makes a difference anyway. We have tried so many things. Even the in-home therapists we had in the past really struggled, and nothing worked. It's like he is programmed to behave this way, and there is no way to deprogram him.

Seriously, I am at rock bottom. He takes no responsibility, does not respect us, blames everybody else for his problems, and has no empathy for anybody. Every day is a huge challenge, and lately, it has worsened. He seems so mean and hateful, even. My husband was in tears last night. Bubby kept banging on the floors and walls and when confronted, stated that he wanted to punish his dad. After 10 p.m., when I thought he had finally fallen asleep, I went to turn off the light, and he sat bolt upright in bed and asked where his dad was so that he could bother him more. I am not sleeping or eating well, and we have no life and no relationships outside of this dysfunction. Consequences are a joke, because our son does not modify his behavior in the face of consequences. He wants CONTROL over everything.

In terms of medications, Bubby is taking Focalin XR for the ADHD and Intuniv to help with the moodiness as the day wears on. Typically, we go through a rough period of irritability in the late afternoon, as the stimulant leaves his system, however, right now, he is very irritable and it is mid-day.

I can't stand my life. This is just one example of an issue we're having, and there are many, many more. There is no peace and no rest. We have no respite and no help from family.

It is so glaring that there is something completely wrong with Bubby, and I'm heartbroken. This is unacceptable. Sometimes I think I would rather be in prison (not joking). He's downstairs screaming at me right now. Is there any hope?

 

[EndangeredCheerleader]

The perseverating is so exhausting. You have my sympathy.

It's impossible to follow through with an immediate removal of item from a kid who can physically overpower you. I won't physically fight a kid to hand over an item unless it's something dangerous. We block imessages and shut off wifi connection via itunes. Can you do that for games? ETA: I can ask Caffrey if he knows how to do this if you are interested in trying this route. He's the one who taught us the block imessage trick.

Have you considered adding Risperdal or Abilify? Risperdal helps PigPen tremendously.

 

[stressbunny]

Thanks for the reply. I'm not high-tech, I guess, and I'm not sure if I can shut off game access via i-tunes. That's a much better option than the alternative. We haven't tried Risperdal or Abilify. I believe they are atypical anti-psychotics, right? I'm so concerned about side effects and mixing so many medications at the same time. But . . . the verbal (and sometimes physical) aggression are exhausting. Can you share more about how Risperdal helps your difficult child? Thanks again.

 

[ksm]

I am not too tech savvy either, but when I ask our girls to put the ipods away (usually because I need them to do something) or they are in their rooms texting and talking and sometimes video chatting on ipods... I just go unplug the modem. That usually gets them downstairs. We have been known to take the modem with us when we leave the house and they aren't supposed to be online until homework, chores, etc are done. I know it doesn't keep them from playing some games - so not sure how that works for you.

I know how stressful all this is on yourself and your marriage. It is so hard... KSM

 

[EndangeredCheerleader]

Thanks for the reply. I'm not high-tech, I guess, and I'm not sure if I can shut off game access via i-tunes. That's a much better option than the alternative. We haven't tried Risperdal or Abilify. I believe they are atypical anti-psychotics, right? I'm so concerned about side effects and mixing so many medications at the same time. But . . . the verbal (and sometimes physical) aggression are exhausting. Can you share more about how Risperdal helps your difficult child? Thanks again.

I completely understand your hesitation regarding medications. Pig Pen had a breakdown in third grade and developed major school phobia. Something had to give because he was completely shutting down in his educational environment no matter what modifications were made. He had been doing weekly behavioral play therapy for over a year without much success. We enrolled him in a therapeutic day program- where he still couldn't cope- which lead to week at a psychiatric hospital. and medications. It was a difficult road. He is now on a classic psychiatric medication combo of Zoloft 75mg/Risperdal 0.5mg/Concerta 54mg. His ability to cope with life in general is so, so, so much better. He still perseverates but not in the abusive manner we had become accustomed to. His 14 year old cousin is on the same kind of combo- FocalinXR and Risperdal- with huge improvement in social functioning. (His mother held off medicating until puberty)

medications don't work the same for everyone, even within the same classification. We added one medication at a time even during stay at psychiatric hospital. and day treatment. Pig Pen had a bad reaction to Prozac- physical aggression- but Zoloft works great. Intunive actually made his cousin (and Poppy) dizzy and caused stomach aches. It's not easy getting the right combo but sometimes it's what needs to happen in order for the family to function.

 

[soapbox]

He's 12. And on the spectrum. I remember those days.

A couple of possibilities.
1) he's still missing one or more dxes. I know... "they" said all that to us too. But it wasn't until HS that we got one of our KEY dxes... Auditory Processing Disorders (APD), auditory processing disorder - in our case, auditory figure ground. It was driving difficult child insane... making school beyond impossible... and the mental exhaustion was the source of a LOT of his unwanted behaviors. Not saying your difficult child has Auditory Processing Disorders (APD)... just that, having an Autism Spectrum Disorders (ASD) diagnosis doesn't rule out other stuff, and other stuff can also be a problem.

2) Some kids on the spectrum do better going through those tough puberty years with the help of medications that take the edge off the irritability... been there done that.

 

[Bunny]

Does he take the IPod with him when he goes to school? If you tell him you're going to take it, but don't want to get into a physical confrontation with him (which I completely understand) take it while he's a school. As far as him saying he will call the police of you take it, let him. They will give him the lecture of his life!

My son does alot of what your son does I terms of trying to irritate everyone around him. He'll stomp up the stairs really loudly if he's angry about something. One afternoon he was annoyed and went to go down into the basement. He closed the door behind him quietly, then came back and said, "Oh! I meant to do this!" and proceeded to open and slam the door closed five times. I know he was looking for a reaction out of me, but in all honestly it was not worth the satisfaction it would have given him. I tell you all this because I get it. It's frustrating and exhausting, especially when it goes on and on and on for hours.

Have you spoken to his doctor about the length of his carrying on? My son takes Risperdolq, which is a mood stabilizer, and while no medication will make a difficult child behave like a easy child, it does help. It stimulates the appetite, so weight gain is a side effect, and my son has blood work done every six month to monitor is cholesterol and sugars. It can also make them tired, but it's really made a big difference. My son still has meltdowns, sometimes pretty epic ones, but they are less frequent.

 

[stressbunny]

While it's tempting to try Risperdal, I am completely horrified by the reported side effects of this drug, especially in adolescent males, i.e. breast development. Also, the risk of significant weight gain, diabetes, and movement disorders (possibly permanent), etc. are very concerning. Exchanging one problem for a whole host of others would be tragic. I am one who has suffered a life-threatening SSRI drug reaction after taking just one pill. The problem is the way these medications are promoted to physicians and their off-label uses, especially. Doctors were prescribing this drug for use in children long before it was approved for certain purposes in children because of the scandalous way pharmaceuticals compensate promoters and encourage representatives to promote off-label usage. It's a shame, because the side effects can be extremely severe and life-altering. All drugs have side effects, but this type of medication is known for especially serious neurological, metabolic, and hormonal alterations. I'm sure this drug is helpful in some cases, however, I think it should definitely be a last resort option. As bad as things are with our son's behaviors, I would never forgive myself if he suffered serious side effects from an anti-psychotic medication. Johnson & Johnson's pharmaceutical division is facing billions in lawsuits over its studies that significantly misled prescribing physicians, as well as its illegal promotion of Risperdal for use in children prior to FDA approval. This drug is a risk I'm not ready to take at this point, given the information I researched.

 

[BusynMember]

I don't blame you for being cautious about medication. We got burned with medications and kids on the spectrum often don't respond to medications in a good way.

Now about his being on the spectrum...he is not going to behave in the way a typical kid or person will respond to anything. His mind is wired differently and trying to make him act like or think like a typical kid won't work. Those of us with spectrum kids have found we need to use different, creative parenting methods and to try to understand how our child thinks, the way he/she has to figure out how the world thinks.

Is your son getting any autism specific interventions either at school or in the community? If not, I'd start there first. He should have an IEP addressing his Autism Spectrum Disorders (ASD) even if he is a good student.

Also, if your child was affected by drugs or alcohol in his birthmother's utero, that could be a large part of the "Autism Spectrum Disorders (ASD)." May be more than Autism Spectrum Disorders (ASD) doing on. Your child is different than biological children who had mother's who took care of themselves during their pregnancy and from those who had a good first two years of life and to those who do not have disorders.

 

[EndangeredCheerleader]

I'm sure some other amazing mom will be along with advice not involving medication. Good luck.

 

[TiredSoul]

Oh wow. I totally get it and feel for you. My bubby does the exact same types of things. He is 11 and has an ADHD/ODD diagnosis but I would swear from reading your post these two Bubby's must be twins!

I don't have any answers and things seem like they are getting worse. My difficult child takes Concerta and Intuniv and I am also afraid of the other drugs.

I would love to hear some real practical advice about how to deal with situations like you described. It is so so difficult and draining for sure. My health has suffered and so has my marriage.

((Hugs))

 

[InsaneCdn]

As bad as things are with our son's behaviors, I would never forgive myself if he suffered serious side effects from an anti-psychotic medication

Just remember that NOT medicating can be just as bad as medical side-effects. It's a really tough balancing act between the side-effects of medication and the "side-effects" of various dxes. Sometimes, it really is a life-and-death choice... either way.

I'm not saying to medicate... just, keep your options open.

 

[Liahona]

Wow. If you do unplug the modem. I'd take it out of the house. Just let him stew for a few hours with out it. (You might want to call the police before hand and tell them what you are doing. Then when difficult child calls them they will be prepared.)

difficult child 1 said something about how he thinks "Why should I?" He wasn't being sassy. It was a legitimate question. He wanted to know what he was going to get by being good. What was he going to be paid? That is how my Autism Spectrum Disorders (ASD) kids think. Very literal I do X then I get Y. I have to make it more rewarding for them to be good than to be bad. For difficult child 1 this includes daily behavior charts with rewards he really wants. If I want him to work at home I have to set up Minecraft time. If you do X number hours of work you get Y minuets of minecraft. I have to be very specific on what kind of job I want done, what attitude it must be done with, and what time he has to finish by. I have to be very strict on all of those or he doesn't know where the boundaries are and his anxiety (and behavior) skyrocket. With difficult child 1 having his therapist or case manager talk to him and help set up all this is very helpful. He respects them much more than he does me.

difficult child 2 and difficult child 3 also earn minecraft and ipad time. Again it is if you do x then you get y. They have to see the reward/payment. At the same time we do go over how it feels good to do nice things for others, it is nice to have a clean house, we have to do dishes if we want to eat. But they don't really understand yet. Eventually I'm hopeful they will.

So, why should your difficult child act good?

If you do set up a behavior plan for him it might be good to role play a few times what will happen when he doesn't earn the reward. For example, if you act nice for 1 hr (define nice) then you get 1 hr of ipod. If you .... (scream, stomp, ect...) then you will be told "No, you did not earn it this time. You can try again next time." Then you have the choice of (and list things he likes to do.) Still be prepared for him to not be happy when he doesn't earn it. If he physically hurts you can you leave until he calms down? Or is there a place he can stay for a few hours until he calms down?

Sorry, its late here and I'm rambling a bit.

 

[stressbunny]

Thanks for the great responses. I appreciate your time posting.

Update: After I left the room with Bubby when he refused to give me his i-pod, I went upstairs to post here. I continued to ignore his ranting downstairs. I focused on cleaning the bathrooms and distracting myself from my rising anger, hurt, and utter frustration. About 40 minutes later, Bubby came upstairs to tell me that he had thrown away the "tickets" he wrote us. He was ready to drop it and move on, perhaps because he was hungry and wanted me to fix him something to eat. While he didn't toss the sticky note tickets when I wanted him to, it's still a breakthrough that he did at all, because he has refused repeatedly up to this point. He didn't bring up the issue any more the rest of the day or evening. What a relief! I didn't end up taking the i-pod since he eventually did what I asked, but maybe I should have anyway. I feel inadequate largely because I really don't know what to do in many situations. He did what I wanted him to do, just not in the time I would have liked.

In the future, I am definitely going to look into the Wi-Fi disabling and use of i-tunes to control things. He is no longer in school, and when he was, he brought the i-pod with him for use on the bus and after school.

I wouldn't be surprised if there is a missing diagnosis, i.e. Auditory Processing Disorders (APD), mentioned earlier. And, puberty is just beginning, so I'm sure that is causing some changes that affect behavior as well.

We've had in-home intensive autism therapy for Bubby in the past (for about 1 1/2 years), and this did help his social functioning, i.e. taking turns, participating in conversations, self care, and responsibility. He "graduated" out of that, but I'm definitely open to getting more behavioral help of some sort.

I think part of the problem is that Bubby's day is not structured. We are so focused on preventing/dealing with meltdowns that we're not doing enough in the way of requirements and expectations of him. For example, he should have some chores and responsibilities around the house. The truth is he has very few because during the school year, our main goal is to get him to do his homework, which takes up the majority of every evening. I would like to develop more of a routine for the summer. He is home with me on most days because I work in education and have time off during the summer months. Ideally, I would like to do more than just survive each day. I would like Bubby to develop life skills and function better at home and in the world. I would like to work on some academic areas in which he needs help, and most of all, I want to have a positive relationship with him.

I do feel torn about using yet another medication, such as Risperdal. If it were to help these symptoms (extreme irritability and verbal/physical aggression), it would be great. Yet, I find the risk of known side effects to be quite unacceptable. Everyone has to make a decision they think is best in their given situation. I realize there is also a risk to not using medication. I'm just not comfortable with the health risks involved in using Risperdal. By the time the side effects appear, they may already be permanent.

Traditional parenting techniques can really backfire, and I think that's the challenge we're all facing. Our kids' are neurologically different than most, and as a result, our methods for helping them must be adjusted. Our biggest problem is that in the face of even the biggest consequence (natural or otherwise), our difficult child does not modify his behaviors. Even when it is obviously in his best interest to do so. Lack of ability to self regulate behaviors and emotions, modify behaviors, and generalize learning have a significant life impact on these children. I know you all understand, and boy, what a challenge we have in parenting them well.

 

[InsaneCdn]

I'd be starting with two things... one for the summer, and one for the fall...
1) Structure at home. Sit back and look at what structure you do have, and formalize it (meal times, bed times, other routines that are daily or weekly). Then think about what kinds of structure you can add to that for the summer. For example, after lunch every day is "outside" time... Technology time is bla bla, a couple of small (to start) chores tossed in there (clear the table after breakfast? or sweep the floor?)... start building, and see what happens.
2) If homework is taking all evening... I'd be wanting changes to his IEP. The kid NEEDS a life - just like every other kid. Allow for half an hour per week, per grade. So, grade 6 could expect 3 hours of homework per WEEK, or not much more than half-an-hour per day. Personally, I don't count "reading" as homework... another half hour of reading shouldn't be a problem. The rest needs to be done at school. If they have to adjust their expectations, or provide him with resource help to do it at school, so be it.

 

[Californiablonde]

I also have a twelve year old son on the spectrum and I deal with some of the behaviors that you are describing. Lucky for me easy child/difficult child doesn't have many meltdowns, maybe a few times a year, but when he does it gets ugly. His triggers are almost almost always technology related. If something breaks or it freezes look out cause all h-ll breaks loose. One time he broke down cause I told him we couldn't have his birthday party till a few days after his actual birthday. He flipped out and started trashing our whole apartment. I tried to appease him and tell him we would still be having a wonderful party for him, but he wouldn't stop for several hours. I finally caved in and made the party for an earlier date. His dad was so mad at me for giving in, but he wasn't there for the tantrum and he didn't know how hard it was for me to contain him. So most people would say I'm a terrible mother who gave into her son but I did what I had to do at the time to survive.

He will throw things, rip up papers, slam doors, scream, kick in walls, and sometimes even cry. When he is in meltdown mode nothing I say or do stops him. He has to work it out on his own, usually with me following him from room to room to make sure he doesn't break anything. I won't medicate him either. He takes Focalin during school for his ADHD, but I don't feel it's necessary for him to take another medication for a few little meltdowns a year. I get your hesitancy with not wanting him on more medications, but if it ever comes to that point try not to feel too bad about it. My older child's psychiatrist recommended a fast acting Risperdal tablet that you put under the tongue for big rages. It is quick acting and usually calms them down within minutes. I haven't tried it yet but I know it's an option. The side effects are fewer than the regular pills because you only give it as needed. So maybe that's an option for you if you feel it's needed at some point. I agree with InsaneCdn about the structure.

Most kids need structure anyway but with an Autism Spectrum Disorders (ASD) kid it's a must. They thrive on structure. My son does better when he's in daycare and at school because the day is very structured and he relies on timing everything. I used to get him to before school daycare at the same time everyday. One day I had to take him late because of an appointment I had before hand. He flipped out on me. I always got him there at 6:45 and one day I couldn't take him until 7:15. He freaked out because he said I ruined his day by not getting there at the same time we always did. And if he's late for school it's the end of the world for him. He cannot be late or he freaks. That's something that will definitely work in his favor as he gets older because I guarantee you once he gets a job he will always be right on time. During the summer I do my best to keep his time structured. Lunch at the same time, going pool to swim at the same time, showers, etc. For my easy child and his peace of mind it is a must. Is your son also in therapy? Forgive me if I missed it because I haven't read all the responses. My son is in a social skills group at school and he has a speech therapist working with him one on one. It really seems to be helping. I would use the school resources as much as possible for your son. Good luck to you and I hope some of this helps.