Hi All. I'm new to the group. My son is 12yo with ADHD and in past couple of years, was also diagnosed with ODD. Meds tried: 4 of the typical stimulants, all of which seemed to make him agitated and/or aggressive, Straterra (did nothing), Guanfacine & Clonidine did nothing for impulsivity or typical ADHD symptoms, but significantly reduced screaming tantrums and demanding my attention to argue with me/make his point. Most recently after a significant increase in risk taking behavior, he was put on Seroquel for 2 reasons: 1. a morning dose in hopes it will counteract aggression caused by a stimulant and 2. His worst behaviors at home come from waking at 3 am to prowl around the house while all are asleep, sneaking food, electronics, rummaging through our cars, and even stealing money from everyone in house. He seems like some super genius who can bypass almost anything we lock up, including breaking into safes, disabling security cameras, and "hacking" computers, passwords etc.
Currently, he is on Seroquel, Clonidine and just reintroduced Concerta. I have a fairly strong background in ADHD and have implemented behavioral management strategies for him, created a 504 for school etc. and he has not gone a day since last summer not sneaking. Teachers constantly complain about class clown and disruptive behavior. He's in advanced classes and grades are fair. While I realize stealing can be a part of ADHD, it is maddening for everyone in household to constantly feel violated. He also recently shaved his head and ran away. His excuse for running away is because we don't let him do what friends do. He will flat out admit that he wholeheartedly believes he deserves all freedoms/privliges before needing to earn them. His thinking is very flawed and we are the worst parents ever (when he is in a verbally abusive-beligerent mindset) if he is held accountable or can't get what others have because, God forbid, he must earn them. In his mind, rules are meant to be broken and "no" means I'll just find a way around your boundaries. He is also becoming increasingly vindictive.
In rare moments of maturity and clarity, he does show interest in improving and will even come up with smart plans, but again, will not even go a day following through. We are defeated and depleted, constantly having to hide or lock up things in the house, him waking at all hours just to get into things, getting constant calls from school etc. No med seems to keep him asleep, but Seroquel (not too crazy about this med considering potential side effects) is giving him an extra hour or two of sleep and no stimulant is yielding more positives than negatives. His behaviors almost seem like addict behaviors lately. We've done just about everything we can. It is like living in a prison keeping up with him and locking things away. It is also very worrisome as I'm typically very connected to him and feel like if I don't find the right mix soon, this may develop into worse issues and have profound effects on his future.
I'm not sure if I have a question. I am just so busy constantly getting help and dealing with he and one of his sibling's issues, I figured I should maybe reach out for support for myself. If anyone has a similiar experience with very hard to treat ADHD (typical meds don't work) and those with kids who have to deal w/ ODD as well, I'm open to any helpful thoughts and suggestions. Thanks for reading.
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paperblue
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I just want to give you a big hug..We all appreciate you being here and sharing your experiences.
For us this was a "phase" we just had to live through. Once our son had a carrot and he knew he had to behave and life was great for all of us.
Staying the course of support: 504 plan medication, therapy ( could he do this weekly?) And constant telling him, we love him but do not like or support his choices.
We are always hear to just listen to you if that helps support you.
paperblue, your post raised a tear to my eye.. Another big hug from here🫂My children are younger, but can also be defiant, enough oftwn to qualify for ODD diagnosis. I find myself constantly reduced to "If you dont listen the "X" will be stopped/taken away" etc. strategies, sometimes to get any form of response at all!
(I know tv/tablets have their place, I know hyperfocus, I know tune out, overwhelm, overstimulation. Buy when "listen or there is no dessert!" gets an immediate response, Im not sure they actually apply 🤔)
I wish I had answers 🙄
Dr. Russel Barkeley has some intersting stuff to say around ODD and ADHD,
I havent watched it all yet, I only came across it yesterday via an insta short, but I will watch it as I respect this man immensley.
I hope its helpful for both of us👌
Your boy sounds like a genius problem solver though! Maybe thats the angle to take, though I wouldnt know how that would look. Creating "novel problems" for him to work through to get what you need from him? I imagine that would be exhausting and very difficult, especially as if he is "aware" then his ODD adaptive response will still be debilitating for him 😵💫
Hopefully Onthemove1971 is right and it will be a phase
Echoing others in big hugs to you and your son. So glad you’re here—this is a supportive community. I agree with Onthemove that there is hope. With the three legged stool approach—adequate supports at school (IEP or 504), the right medications, and the right therapy, things improve. As you mentioned with the medication piece, it’s not as easy as it sounds putting those together! Sometimes a new doctor for med management is needed, sometimes a different therapist or therapy approach is needed. Sometimes an advocate at school or an IEP for skill teaching. The continual reevaluation and change is exhausting but eventually the right pieces and help will do there job—there is hope! Not every approach is right for every family, but for our kid switching to positive behavioral therapy/positive parenting helped with rebelliousness. Volunteering with animals, at a farm, or somewhere where you can nurture others and gain pride in your work can also build self-esteem and develop connections with others in the community. Take care of yourself too! You have to put on your oxygen mask first. Another great resource is tilt parenting. Again, welcome!
Hi paperblue, I understand what you're going through. My daughter is 12 and very rebellious. She hasn't been diagnosed with ODD, but I suspect she has it. The stimulants make her more aggressive and generally unhappy and the other meds don't seem to work, either. We've tried both stimulants and non-stimulants. She has trouble sleeping so I bought a weighted blanket for her. That has helped. Her pediatrician suggested melatonin, so we tried that. Her personality has changed while taking the stimulant medications and we're probably going to discontinue them this summer. Swimming, acting, music and dance have helped her, as she is talented and creative.
My daughter has a 504 plan at school and I meet with her teachers regularly. I completed online Impact Parents training, which was also very helpful and I highly recommend. I have read so many books about ADHD since her diagnosis in 4th grade. I also listen to ADHD podcasts. We tried executive function coaching, which is pricey but seems to work for her. She often forgets to write her homework assignments down and to do her homework. She only had one session of online therapy but I'm not sure if we're going to do that again. Thank you for sharing your experience. I wish you the best! I'm a single mom and special education teacher. We're just trying to get through 6th grade! Lol We're almost there. Please feel free to reach out. I hope you have a great week.
Hi there. Sending big hugs to you! I wanted to ask if you've heard of PDA - Pathological Demand Avoidance. Our son was diagnosed ODD (and ADHD and Autistic). But the PDA profile fits him SO much better. In a short description - it is a nervous sytem disability and anytime they see a lack of control it activates their flight/fight response. They don't recognize heirarchy, have a strong belief in fairness, and any "demand/request" sends them into flight/fight. What has helped us in rephrasing the way we ask him to do things. It is called "declarative language". Our son is younger (9) but it has made a world of difference. Happy to share more if you want to learn about it. It was like a lightbulb went off when we learned about PDA!
Thank you for all of the warm thoughts, support and suggestions. Since my initial post, he became worse and was aggressive and destroying property since restarting a stimulant. Oddly, I have also noticed what appears to be a manic-like response prior to his nightly dose of Seroquel. He also was missing more assignments at school than normal on the Concerta and got two referrals. He is now off both and doing straight clonidine until we hear some direction from the doctor. Things feel even more hopeless when a new counselor says he may need more serious help. The parents and the counselor feeling helpless is not uplifting to say the least.
I have not heard of PDA, but did a quick read just now and it sounds interesting. I may know "declarative language" by a different name. Can you offer an example?
I will look into Impact.
What is the specific name to positive parenting behavioral management?
I have actually watched Dr. Barkeley's presentation and e-mailed with him about specialists.
One of our biggest issues as I'm sure many here have faced is finding a child counselor and child psychiatrist and the months we've had to wait while he got/gets worse. We now have both, so we'll see.
Good evening! There are a number of providers of parent training in positive parenting. Evidence based programs include The Incredible Years and Triple P. Some of them offer online training (Triple P for example) and are really reasonable. Parent Child Interaction Therapy and Collaborative Problem Solving also have studies supporting them.
We worked with a psychologist who taught us techniques. Most were exactly as described in these programs, but he also had us use behavioral principles (FBA / BIP style, but at home) too. We would put them to practice and then report back issues that cropped up and get new instructions. With a lot of parent coaching we shifted our responses and slowly things began to shift in our child. Medication helped too! Fingers crossed that with your new psych/psych you will make good progress!
I an here for you to listen to you and be part of carrying somehow part of the load you carry. I cannot fathom all you have lived. I'm impressed of how such a beautiful soul your son is. I was thinking that he is so much that his human body is not able to handle his greatness. Human body is so limited and it clearly shows this to be true. His intelligence and everything about him is amazing. I see your frustration. I don't mean to disrespect in any way. But in the whole world there was nobody more qualified to handle such greatness. Many see us as defective or broken, etc. But that is not true. So here you have been given a beautiful gift. Only you are able to handle it, take care of it, love it, understand, and with that in mind help this soul adjust to his human form and allow his greatness shine. May you also see the greatness that is within you. To accept this gift knowing that you too have been equipped to guide this young man to fulfill his destiny. Sending you love and blessings. Thank you for sharing.
I have a few things that might make you feel better.
1. He’s 12. They want to be identical to their peers. This is 100% normal.
2. He cannot take perspective of others quite so good as he will, just yet.
3. He is having a hard time expressing all the things that are changing during this Nobel point of development.
4. ADHD can cause a 2-5 year delay in social emotional growth. It’s in the correct trajectory, but his brain isn’t maturing as typically developing kids are.
5. It’s really scary when you think that you are loosing control. They do have you voice in their minds, so don’t worry they will do the right thing .
6 . Take a look at this model called Collaborative And Proactive Solutions on livesinthebalance.org . This is a non commercial company and the model is wonderful with kids who don’t have the ability to accept the imposition of an adults will. It it based on not using the “do it cause I said so method” or as they call it Plan A. It also has its roots in being proactive instead of reactive. And you definitely can learn how to do this.
7. Insert yourself into his world and you will always have a place in it it it means playing video games, do it. Ask him how to get to the next level.
8. Siblings need a lot of reassurance. If they are old enough to see a counselor, send them for therapy too. This takes a toll on the children who aren’t affected also.
9. Middle school is like having 7-8 parties jobs with different rules and duties, and then you come home and have another boss tell you time to start the work you didn’t finish in school…have a snack. None of us would stay at that job.
10. Learn all you can about ADHD and find a CHADD parent meeting near you. The chapters and affiliates near you can be found on the website.
I hope some of this helps. I know it is really hard right now, but it does get better.
I'm so sorry you are going through this. I know the pain of worrying about your child constantly and feeling like you are failing.
Your son is obviously very smart. I can see him being a penetration tester one day. They are hired by companies to try to hack into the company, so that they can test their security measures.
Have you done any bloodwork on your son? We struggled for years with meds that didn’t end up working out (and now he has Tourette’s). The protocol is you get your child diagnosed, then straight to prescriptions without knowing if there is anything else going on. My son just started seeing a functional medicine doctor after I did 2 ferritin tests at home and his levels were SO low (9). There’s studies on low ferritin levels that correlate to the severity of ADHD symptoms so I would definitely have that checked to make sure that isn’t contributing to behaviors. The Dr is also doing full lab work to see if there is anything else “off”. Also, there’s a med called Amantadine that has promising results but is not FDA approved for ADHD, probably because it’s a generic and no $ to be made sadly but you could definitely inquire. I’m so sorry you’re going through this, the good thing is so many children with ADHD go on to have success as adults. I pray it gets better for your son soon!
Since my last post he received several days of out of school suspension and ran off. Once I got home from work and my husband told me this, I was very worried and went out searching for him. He was found playing with someone, but due to increased risky behaviors, we had him evaluated and he was admitted to hospital. Since then, aside from yet another med change, there overall has been no significant change with the exception of two days of earning good behavior recognition. Once he returned to school, he was back at it again.
While it was great to have my old guy back for around 2 days, nothing else has changed except he isn't aggressive and destroying things like when he was on a stiumulant. He had bloodwork in hospital. He also will meet with a neurologist next month to determine if a MRI needs to be done from a head injury, however it is doubtful that had long standing consequences considering there was never a sign of a concussion. Nonetheless, doc wants to rule out anything medical, which I completely agree with, though I'm afraid it is straight up defiance/behavioral.
Aside from him cussing at us...Ex to dad: Yelling in broad day light where I'm sure neighbors heard, "I'm not following your bullshit rules" or telling me, "Oh hell no" in response to me calmly directing him to do dishes and other similiar verbal abuse, he seems to think he can do as he pleases and leave the house whenever he wants and come home whenever he wants even though we clearly and calmly state, "You did not ask. You do not have permission to leave the house." We have called the police before so he knows we will do that if we feel the need. The law is minors must obey parents rules, but leaving or running away is not against the law, leaving us with very little recourse. He has a medical condition too so that increases his risk when leaving the home. He has doctors, a counselor etc. but he is of the mindset he will do what he wants when he wants and take whatever he wants. Considering that, it makes us feel we have almost no leverage or control, yet I do not intend for a 12yo to think he can come and go as he pleases. It is tricky because nothing small or big (hospital, police) have worked so why shouldn't he keep doing as he pleases (in his mind)?
That sounds very stressful. I am so sorry your family is struggling. Did you have any luck locating a behavioral treatment plan provider (positive parenting behavior therapy)? Parent-Child Interaction Therapy, Collaborative Problem Solving, Incredible Years program, Triple-P Positive Parenting Program, Start Now and Plan program, and Coping Power Program Are some of the most evidence-based programs. It sounds as though you have the medication piece figured, so hopefully with the behavioral piece you’ll see some change. Sending positive thoughts!
He has a counselor, but thus far she does not guide us in the parent coaching type ways you are referring to. PCIT is for younger kids so the bulk of therapists here will not see him/us due to being too old. To try to find the therapist he has was hard enough. I should say to find any child/teen therapist is very difficult due to supply and demand unfortunately. We do an online program. I think he might benefit more if it were more evenly divided with a behavioral therapist seeing us part of the time and him the other part. I'm well versed in CBT, but close to the situation therefore additional coaching could prove useful.
Although I'm sure we make mistakes, our attempts are to no debate with him, repeat expectations, distract, ignore, and try to remain calm and not overly emotional among other techniques. When he calms down then one can have more productive conversations at which point we try to figure out what is going on (I call it playing detective), potential solutions, goal setting, plans and encouragement.
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She only had one session of online therapy but I'm not sure if we're going to do that again. Thank you for sharing your experience. I wish you the best! I'm a single mom and special education teacher. We're just trying to get through 6th grade! Lol We're almost there. Please feel free to reach out. I hope you have a great week. 
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