My 5 year old son was diagnosed with ADHD and DMDD. He's angry and mean all the time. He didn't used to be this way; it started developing a few years ago and has gotten worse. We're trying now to find medication, none seem to work so far. He needs behavioral therapy but I can't afford it. He's so smart and can be really sweet and funny. But how he acts lately I honestly don't even like being around him. I'm low-key developing PTSD from his violence towards me and others and having to walk on eggshells around him. He's on the precipice of getting kicked out of school due to his behavior and we're only 3 weeks into Kindergarten.
Will I ever get him back? Will it ever get better?
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redmama2
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Our son had really difficult behaviors when he was little. It does get better as you build your team of support. All kids do well if they can. Often behaviors result from an inability to do what is expected because of anxiety, pragmatic language issues or sensory issues. An initial evaluation by SLP or OT is usually covered by insurance. If you can, try to see a developmental behavioral pediatrician (healthychildren.org/English.... Their training means they look at children from a ‘needs’ perspective and help you line up resources to address lagging skills and unmet needs. Psychiatrists are good at medication management but their training and expertise is quite different. We discovered in first grade that our son is also on the spectrum. Learning that helped us zero in on therapies and behavioral approaches that work specifically for him. As you grow your own team, you will find more and more approaches that work for your son. It takes a village, but it does get better! If you haven’t already, reach out to your state’s parent resource center. They should be able to put you in touch with supportive services both for you and your child. parentcenterhub.org/find-yo...
Thank you, I’ll look into that. He’s on Medicaid right now so it’s tricky to find doctors willing to accept the insurance :/. I do want to get him tested for autism but his doctor doesn’t think he needs to be because he can talk…after 3 years of speech therapy 🙄
You are being a strong advocate for your son by continuing to seek out second opinions. You sound skeptical of your child’s doctors opinion and I would be too.
Do reach out to other organizations for help. Other kids have Medicaid and these organizations can help you navigate. Your states parent resource center and your local autism society should both be helpful.
If you haven’t already, consider also reaching out to your child’s public school district (even if not enrolled) and requesting a “child find” evaluation to assess for autism. See understood.org/articles/chi.... An educational diagnosis is very different than medical, but with an IEP your child will be more protected should they engage in behaviors as a result of their disability that would otherwise lead to disciplinary measures. See understood.org/en/articles/....
Hang in there momma, you’re doing the right things and it does get better once you have some supports in place!
We’ve been working with our local school to get speech therapy. They said they don’t have resources to diagnose autism or other conditions and they don’t offer individual counseling at his grade level. I’ll have to go through the district to get an IEP because his school doesn’t have a counselor or anyone capable of making those. But once I get one at least there will be legal accommodations they will have to follow so I don’t have to worry about him getting expelled.
I would agree that a careful evaluation to be absolutely sure you have the correct diagnosis is really important. I would agree with getting either a developmental behavioral pediatrician, speech therapist with extensive experience with autism, or a child psychologist with extensive experience with autism (that’s most of them) to see him. If he has significant meltdowns, aggression, oppositional and defiant behavior, many psychologists who specialize in autism would argue he needs a complete diagnostic evaluation for autism before calling him DMDD or ODD. This is what I learned from a long term course on autism for healthcare providers in which a psychologist with our local developmental behavioral pediatrics division spoke to us in detail. Many kids are misdiagnosed or mislabeled with these other disorders. I have no way of saying your child is in this situation. However, this was her strong recommendation. Interestingly, she and her colleagues actually said they really question the existence of ODD, for instance, as a diagnosis, and feel those kids with ADHD + ODD should all be evaluated properly for ASD. I don’t have the expertise to comment on that. But it was an eye opening discussion. Hugs to you.
I know that ASD can certainly cause emotional issues, and I do believe that people with ASD can certainly exhibit ODD. However, I also know that ODD can come with ADHD. (I've seen it too often in people with ADHD, although several of them either had a known ASD diagnosis as well, or exhibited autistic traits.)
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e.g. ODD due to only ADHD (undiagnosed)
My eldest daughter was the picture of ODD when she was a teenager. (I just read the diagnostic criteria in the DSM-5...she fit it to a tee.)
She wasn't diagnosed with ADHD then, but her doctor now that she's grown has suggested that she be evaluated for it. She's regularly impulsive (and injury prone as a result). She was extremely energetic in her youth, so she seemed very Hyperactive-Impulsive, but not a bit inattentive.
She hasn't ever seemed to fit any of the criteria for ASD.
I want to get him evaluated for autism, I’m trying to look into that. He definitely has sensory issues and he didn’t talk at all until he was 2. He seems to fit other criteria as well. He has Medicaid so it’s difficult finding specialists that will accept it :/
My heart aches for you. Our ADHD/high functioning autistic son went through a phase where he transformed from being high energy and impulsive to absolutely hostile, angry, explosive, and abusive also. We had crisis after crisis and struggled so much as a family. We did survive and got through it with a combination of medicine, behaviorist therapy, and cognitive/ psychological therapy for everyone in the family. These were the hardest, most depressing and anxiety ridden years of my life. I don't mean to scare you but I couldn't sleep, my blood pressure was through the roof, and ended up with anxiety and major depression from it all. But somehow we never gave up and somehow got through it. We had the held of some of the kindest most supportive therapists we could find and would never have made it without their help. Without the medicine, it would have been impossible. But without or love and communicating to him constantly that we care so much about him and just want to help him be the happiest and most successful boy he can be. We never wavered from that message and eventually he knew it was true. The good news is that things eventually got better and better. Kids brains change so much during these years. The tantrums and meltdowns eventually became less frequent and less abusive/destructive. He didn't enjoy them and wanted to avoid them. He worked hard doing his best with the therapists and with us to make things work as a family. It took years. It was so so hard. But we got through it.
Our son is now 14 and he's incredibly smart, loving, affectionate, caring, funny, kind, and a good friend.
I can't say for sure how things will go with your son. But don't give up - better days are possible even if it takes years to get there. Seek all the support you can get for your son, yourself, and any other family members if you can.
Wow, not the original poster but I really needed to hear this. Things are slowly getting better for us too and it really helps to hear other people’s experiences that actually give some hope. This community needs more of that. Thanks for sharing!
Thank you for this post. We are truly in the thick of it and I know we have a long way to go. We have found a good psych. helping with meds but really haven’t found a good fit for therapy. Do you mind sharing what worked well for your son? Our son is high functioning autism with significant anxiety (changed after original diagnosis of ADHD)During those tough years was he going through the public school system or a separate therapy school? School is really tough right now.
I wish I had an easy answer for you. There simply was no single thing that "worked" and resolved everything in our situation; also, every child and family is different.
We tried everything we could and, with time, things improved. Here is a list of several thing we tried:
- Psych + medication for ADHD and anxiety (stimulant, guanfacine, and lexapro)
- Experienced cognitive/behavioral counseling with a therapist dual licensed in traditional therapy as well as art therapy (she was an MFA). Our son enjoyed doing art with her during therapy which was calming and helped build their bond together. Going to therapy was less of a "chore" and the art helped him relax and just talk through so many difficult topics. They worked on tools for dealing with distractions/stress/anxiety, role plays, dealing with difficult emotions, and just did a TON of social stories together. Our son was in weekly therapy all the way from about age 8 all the way to 13.
- Group therapy. We went to a couple years of group therapy where kids would do group social/play-based therapy in one room, and parents would do group therapy/support/venting/asking for help in another. It was helpful to hear what other parents were going through and get support in tough times.
- In-home behaviorist. In the worst of our crises, where our son would physically attack family members and damage property during his meltdowns, our lives were literally saved by an amazing behaviorist who helped establish a meaningful system of rewards, incentives, and lost-privileges for good/bad behavior that was 100% game-changing for us. This system didn't immediately solve all our problems, but was absolutely at the foundation of a long, long process of reduced frequency of the worst behaviors and increased frequency of desired behaviors. Critically, this system was used for both our kids, not just our kid with ADHD/ASD, so it was seen as fair by both kids. It took us a few years but ultimately we were able to move past the need for this system. We ended up re-engaging a second in-home behaviorist (the first one moved away just a couple months after we first engaged him but he was so helpful!) for some reinforcement and role-play and behavioral management sessions with both kids when we were going through a bit of a really challenging time between the two brothers (our second non-ADHD/ASD child was acting in truly expected and challenging ways such as running off down the street or running out of a restaurant any time he had an emotional reaction to something ... probably due to seriously repressed feelings and a sense that his feelings didn't matter / he was never allowed to express himself / he never got attention / etc.).
- Occupational therapy. Play-based therapy that helped our son feel good through movement and stimulation that is also good for helping build confidence and hand-eye coordination. We did this for about 2 years.
- Team sports. We got our son involved in soccer and basketball at an early age since these involve a lot of running and mental focus. It also builds social skills, the ability to be coached on things to improve (super important!), interdependence with other kids, sharing attention (and the ball), and humility. Fortunately he really enjoyed them for many years (not so much once he got to late middle school years, but far enough).
- IEP and 504 plan at public school (mainstream) with some in-school support. We never asked for or received an in-class aide, but we did get a district therapist to do in-class and playground observation and provide a certain limited number of pull-out coaching hours as well as push-in coaching to our son (and his teacher) with a focus on reducing interruptions and disruptive behavior. We wrote letter to all his teachers (and the principal) before the school year explaining, as honestly as we could, the challenges and strengths of our child we'd observed in the previous school year. We let the teachers and school staff know we're 100% on their side when it comes to providing discipline as well as a supportive learning environment and holding our son to be accountable for his behavior inside and outside the classroom (i.e., tough love is good). We told them we're always going to be available to talk through how we can support them at home with what they're trying to accomplish in the classroom, and we made them aware of the therapy/support we're providing to our son. We encouraged our teachers to talk to our son's past teachers to ask about what worked best, and we contacted our teachers frequently throughout the year to ask how things were going. We made it abundantly clear to our son that (1) we love him, (2) every kid in his class deserves to have a good learning environment in which they can do their best, (3) his teachers have an extremely tough job which is helping *every student* learn and be their best, and sometimes that means they have to make tough choices such as not answering every question he has immediately, or asking questions to other kids and not just him, or asking him to take a break to go run to the principal's office to deliver a note every now and then to burn off some energy, etc.
- I would keep an ABC log (Google sheet) of challenging situations we encountered as a family (A=antecendents (situation; what led to the behavior; who was invovled), B=behaviors, C=consequences). I would share these logs with therapists online to help guide our sessions.
- Parenting books. "The Kazdin Method for Parenting the Defiant Child", "The Explosive Child" and "Raising a Child with Intense Emotions" were memorable and helpful.
- Therapy for both parents. Going through this was the kind of stuff can break people's spirits, their mental health, and their marriages. We didn't want that to happen. And there were times when we just couldn't support each other because we were too drained, or it was too painful to express or hear thoughts or emotions that one of us felt a need to voice and to have to try to come up with the right words to stay ("What if he never gets better?" "I hate this person he's becoming!" "I hate this life and I just want to run away from it all!" etc.).
- Trying to maintain physical health, sleep, diet, outside friendships as much as possible (and it wasn't always possible). I don't think I need to say more.
If all this sounds like a lot, it was. It was expensive. Insanely time consuming. Absolutely soul crushing at times. But parenting can be like that, even with neurotypical kids. And we knew there were people dealing with situations that were way more difficult than what we were going through. We just persevered, stuck with the plan and the support of professionals, and never gave up trying to love our son (although not all the behaviors... which is complicated but eventually the message sticks) and keep our family together.
Perhaps some of this will be helpful to you or others.
Thank you so much! This is extremely helpful and honestly so similar to our situation! He is currently taking guanfacine immediate release morning and night because they could make it into a liquid. We started Sertraline last Friday. Was your son also taking the stimulant for school? Curious if all three of these helped with school? He’s home now most likely going back September 18 and they want to change his placement. He has huge escalations to the point they had to call 911.
We’ve tried some stimulants in the past but nothing seemed right. Some increased his anxiety way more. Curious if you did all three together?
The art therapy sounds awesome! I have seen that and feel like he’d enjoy it! We’ve pushed to keep him in soccer since he was young and hopefully that stays!
I have read sections of the explosive child and will check out the others!
We are exactly where you said - going down the black whole of “will this ever get better??”, “ We can’t live this life!”
I’m really lost over school and how to help him because it just escalates so high.
I'm so sorry to hear you're in the deep, dark part of the tunnel right now. It's a truly awful place to be as a parent and family. But things can get better, and I sincerely hope you'll persevere and make it to a better place soon.
To answer your questions: For our son, he took (and still takes) all three medicines in the morning with breakfast, including the stimulant. Every child is different, so what's best for our son doesn't necessarily mean it's what's best for yours. That said, for our son, he says the difference when he has Concerta is life-changing. He said he's so much more aware of what's going on and in control of his choices and behaviors.
That being said, even with all the medicine and coaching he still struggled **a lot** with interrupting teachers and peers and sometimes voicing thoughts out loud even when it was totally not appropriate to be speaking out loud (this was the theme for literally grades 1 through 4 ... but things started improving a lot by grade 5).
Teachers tried so many tactics, rewards/incentive systems, providing private Q&A / 1:1 with just him, etc. with varying degrees of success through the years. We were truly blessed by having a 4th grade teacher who was a neurobiology undergrad major and completely "got" what was going on with neurodiverse kids and had an amazing way of relating to and supporting our son. She was an angel in the right place at the right time when we needed it most.
But also a lot of it IMO was also just him "growing out of" these habits with time and a ton of conscious effort (with medicine supporting his ability to slow down and make somewhat more conscious choices instead of just acting purely on impulse).
For our son, he also said that the stimulants made doing boring things easier, and it helped him stay focused on his in-class work enough to finish his assignments so he didn't have homework. All of this led to him enjoying school *a lot more* and that, of course, has an amazing positive feedback loop. When kids feel out of control on the other hand, they misbehave, then they're punished, and everything works in a doom spiral -- they dread school because they're always in trouble, they feel worse about themselves, they care less and less about how they're doing in school, they end up hating it, and that's just not a place any parent or child (or teacher) wants to be.
All I can suggest on the meds is sharing your feedback with your psych and continuing to experiment with different combinations and dosages realizing it may literally take dozens of tries before you find what works. Communication and persistence are key.
If you're fortunate enough to arrive at a good combo, as I said, it is truly 100% life-changing. You may also wish to consult with a nutritionist as I've heard that some swear that magnesium or vitamin D or omega IIIs or olive oil etc. etc. can also be a game-changer for their kids. We're truly lucky in that our ADHD/ASD son is a truly good eater and has a fantastically healthy, balanced, nutrient rich diet, so perhaps we were able to completely ignore this area. But hearing how many other people swear that nutrient changes made a big difference, well, I have to say it's also something to consider.
Please keep trying your best, and always communicate your love to your child. It means the world to them and they'll never forget how you were there for them when it was the most difficult time in their lives. I can't say with certainty but I have a hypothesis that many kids (not all) with ADHD/ASD have a profound insecurity -- possible even unconscious -- that comes at an early, vulnerable age that their parents secretly hate them and resent them, and are just pretending to love them. Further, gnawing insecurity makes them deeply anxious, depressed, angry, hostile/defiant and irritable. So I think it's extra important with kids like ours to deeply, frequently, and persistently express our love to our children over and over and over again, so they can really believe it and feel it. I think if this kind of insecurity can be let go of, it opens a lot of doors for improvements in affect and behavior.
Thank you again! Know you have been so helpful! We are 1.5 weeks into a new anxiety med and doing everything we can to figure out school for him. You are amazing and too kind to share so much! Thank you, thank you!
I'm so sorry, I resonate so much with what you said. My son has ADHD and ODD, he's 12. He was diagnosed by a psychological evalution. Although he is not often physically violent, he can't regulate his emotions and we walk on eggshells. It's been about 6 years now and we definitely have PSTD and I have had multiple breakdowns along the way. The biggest help has been medication, Methylphenidate and Sertraline which has decreased the amount and severity of the blow ups. Lots of therapy for all of us and I have read a lot about how to handle kids like him so I feel better equipped. It's a rollercoaster, good days and bad. I feel like the name ADHD is so not reflective of the actual disorder, it's so much more devastating to the brain than just attention and hyperactivity. I feel that as my son has gotten a little older it can be easier to get through to him, he "gets it" more now than he did a few years ago. He understand his issues better and knows the tools he's supposed to use to calm himself, although getting him to actually use those tools in the heat of the moment is still a huge work in progress. You may not get back your vision of what your son was but it also may not always be this hard. Use every resource available to help you and him, therapy, psychologist, DBT therapy, biofeedback, neurofeedback, OT, etc. I know it can be expensive but it is a must for kids like ours. Are there any programs in your state or county that offer help? We just had a 2 month in-home therapy program through our county, free, paid for by government grants (FAST program Pierce County, Wa). Check with your sons school counselor or behavioral specialist, they should know of any programs like this. It will be a long and often painful road but he will eventually get older and hopefully what he learns along the way will stick. Best wishes ❤️
I asked his school counselor for recommendations and she gave me info about a parent support group. Maybe that’ll be a good place to start. We recently upped the dose on his Intuniv and it’s seemed to help so hopefully that’s going the right direction. Thank you for your response.
I really feel for you. Our son with ADHD and Anxeity who is now 15 went through very similar times with what you are describing. It can be incredibly difficult as a parent. The anger, even though rationally you can learn and understand is an expression of some other emotion from your child, is real and can be incredibly hurtful, sometimes scary and traumatizing. You aren't alone in feeling this way. You are going through a transformation in your relationship with your child that you never planned for and feels completely overwhelming. You feel like you've lost the child you know and love. Others have responded with options for your child, but you will also need to relearn how YOU interact with your child in order to help them. There are a lot of great resources online and in the medical community for parenting children with ADHD that you can find on this site. As you learn what your child's struggles are you will learn new ways to approach parenting them. These aren't quick or perfect fixes, but many parents are able to get back to a deeper connection with their child and find more effective strategies for daily life. It won't be perfect, but there is every reason to be hopeful for your family. You also need to take care of yourself. This support group is one way to help, but consider your whole support system as you figure this out: family, friends, people providing services for you, your child or your family. You don't need to go through this alone. The child you know is still there and needs you more than ever. There is hope even if it doesn't seem like it right now.
I think I may be able to give you hope. My stepkid is 14 now and was also diagnosed both adhd and dmdd in kindergarten (and now with anxiety). I remember the 3 hour meltdowns and beatings in preschool. He punched my boss in the face where I worked at a preschool over nap time.
He didn’t have medication until 11, and I believe his mom only has him on anxiety meds, and none for adhd. Kinder and first were horrible: weekly room clears over any type of discipline. We tried a one on one teacher aid, and even that didn’t work (that’s basically what I do for work, so I knew what to ask for).
In 1st grade, he was put into a secluded special education classroom with boys that were autistic. It taught him emotional coping strategies. Yes, academics suffered a bit, but it was worth it because in 5th grade, he was slowly transitioned back into mainstream and started 6th with just a hub he can go to if he feels bad. He was accepted in 6th grade into an art academy charter school.
He just started high school this year. He has good friends and we didn’t have any major concerns since about 3 years ago when he throat punched his blind dad. It has helped to make sure dad and I have not been fighting and making sure we have a safe environment for him. Not sure if it matters, but my kid happens to be trans, and started going by “they” around the last instance, and decided to go by “he” recently. It’s possible that he learned more about himself and gained confidence so he lashes out less. Either way, as long as they are able to learn coping strategies to manage behavior and have a counseling outlet, they will get better. It does also take a patient, loving environment though too, which with our own traumas and being triggered by them as well, can be extra hard some days.
Advice for right now, seek an iep with the school asap, get counseling for both you and him individually and together if possible, and do self care. Walk away from the aggression to keep yourself safe. See if there are physical outlets for him he likes, and know if you are strong but calm, things will start to click for him.
Feel free to pm me if you have any more questions or concerns. It’s nice to have someone my experience can help! 😊
Thank you for your response. He’s in a small private school and they don’t do IEPs as all of the student learning is individualized. I thought that would be a better environment but now I’m not sure. Maybe public school would be better as they have more experience with these issues.
Even kids with adhd are hit and miss with whether they will do better in private school or public school. There are fewer kids that will relate to him and understand his quirks. Kids generally are punished more for picking on others in private schools, but kids shun people that are different more. If I recall, there was a mom that the kid was ignored by peers in middle school for her adhd quirks. She felt ostracized, even though there wasn’t bullying. In public schools, bullying is a bit harder to single out (there’s more kids), kids do have more peers that have similar quirks. So bullying would be harsher, but there is also more chance for camaraderie.
Does your son get overwhelmed easily? Based on your description, it seems so. If so, public could be harder in that way unless he gets into special education, where they are more specific on environment and special needs. I would give it until Christmas to see if he progresses socially. If not, feel free to try public school. If that doesn’t work, there i# always k12 online learning where he will be able to progress academically, but you would have to find extracurricular for socialization. That could be the best option because you can limit socialization and control the environment so it works for him rather than against him.
I have to work full time or I would homeschool him. That would be the best fit for him I think but unfortunately I can’t afford to do that. He gets along well socially actually, he’s very funny and outgoing and makes friends easily. I’m worried about the teachers. He gets frustrated and overwhelmed easily and they don’t understand that. Like, the last incident we had one of his friends was “in his bubble”. He told him that several times and told him to back up but he didn’t so my son head butted him and gave him a black eye. Personally, I’m proud of him for identifying his feelings and the cause of them and using his words to deal with the situation before resorting to physical means. No, he shouldn’t have head butted him and that’s something we need to work on, but he was getting overwhelmed and it triggered his fight or flight. But all the school saw was that he hurt another student and wrote him up and punished him without regard to his issues. In public school (I work at one so I know) they would have to consider the IEP or 504 when writing him up and the incident would be reviewed by a counselor before deciding on a appropriate consequence.
I think if the kid doesn’t listen, he needs to tell a teacher rather than trying to so.ve it on his own. Easier said than done, especially with adhd. Maybe some role playing will help him practice how to solve these social complexities. Also, ask the school counselor if there is any way he can learn social skills in a small group either in school or out of school counseling . I saw a counseling center that did kids social learning groups, and I know I would have benefitted from them.
I agree, that’s what he should’ve done. But it’s not like he just hit a kid to hit a kid like they’re making it out to be. At least he did use his words first and tried to find other solutions before violence; that’s honestly a big step forward for him. His school doesn’t have a counselor or anything like that. It’s a very small school.
We’ve been working with the counselor at the public school he’s zoned for (he gets speech therapy) but she said they don’t offer counseling or have any therapy resources there either.
We’re in the USA. He has Medicaid (government insurance for the economically disadvantaged) and it’s very difficult to find anyone who accepts it. I’ll look into CMH, thank you.
Yes, it is difficult to find care providers. Most of them are in bigger cities. You may want to contact some of the online ones and see if any of those are covered by Medicaid. Lady I looked for care, it was before the online ones were a thing.
Children's brains go through the fastest change from birth through about age 5. During this time, a child's brain is still growing rapidly, and their personality is forming.
At the same time, that's when ADHD tends to assert itself. The difficult behaviors might be impulsivity run amok, and he might
Does your son have an IEP with the school? Is he placed in Special Education? Special Ed teachers have training to deal with difficult behaviors and might have some behavioral modification strategies that they can utilize? Public school districts often can arrange some services, including meeting with a specialist regularly, and possibly even therapy for students who have an IEP. (Not all school districts have the full range of services available.)
Stimulant medications are often the best treatment for ADHD students, but they are generally recommended for children age 6 and up. They stimulate the prefrontal cortex, which helps with impulse control. But with a 5 year old, many doctors won't consider a stimulant (though some will).
If your family qualifies for social services (which you might, just based on your son's diagnosis), you might be able to get treatment services through a county or state assistance program. Or your son might qualify for services under the Americans with Disabilities Act (ADA).
Thank you for your response. He is in school. I was lucky enough to get him into a small private school that specializes in gifted children (he's also gifted) and all students have an IEP based on that. They supposedly have a lot of experience dealing with special needs such as ADHD and ASD but it hasn't seemed that way. He may be better off in public school where they have actual services and counselors.
He's tried stimulants and they didn't seem to do much which is why we switched to Intuniv, which still doesn't seem to do much.
He has social services insurance but there aren't any providers in our area who actually take it. I found out yesterday about a mental health assistance program through my employer for employees and families so that might be helpful 🤞
I'm glad that your employer has the program. That's the type of assistance program that led to my own ADHD diagnosis.
As others have suggested, perhaps have your son tested for autism. I've read that people with autism might respond very differently to ADHD medication (or not effectively at all). Then again, it might simply be due to his young age.
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Things to consider (which you might not want to share) are factors like adverse childhood experiences (ACEs). These can even predate a child's ability to form memories, such as: traumatic birth, premature birth, being in an automobile accident, major illnesses, congenital conditions like asthma & allergies, prolonged separation from a parent (e.g. my dad was in the Navy when my younger brother was a toddler, which I think gave my brother separation anxiety...but he could barely talk, so he couldn't explain what he felt).
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Exercise and mindfulness (even just "belly breathing") can help people off any age, especially those of us who have ADHD.
I heard on an audiobook* about a study of young kids in a preschool or kindergarten class who learned simple mindfulness breathing using small stuffed animals as "breathing buddies" or "belly buddies".
Here's a news story I found which might be about that study, or a similar one.
*I think the book was The Deepest Wellby Nadine Burke Harris, M.D. I'd recommend her book or video on YouTube for anyone who wants to learn more about how Adverse Childhood Experiences can impact a person, and interventions that can help.
It's not too late for anyone who has gone through adversity, and it's never too early to start teaching children healthy practices such as mindfulness.
I’m a teacher and i have a certification in ACE awareness but thank you. Some people don’t know how to recognize those and how big of an effect they can play on a child’s well-being. He has a few, growing up in poverty, never knowing his dad, and we’ve had some big life changes recently, which definitely contribute and need to be addressed as well but aren’t the root cause. I’ve talked to him about belly breathing and EMDR tapping for anxiety but he’s so oppositional he won’t try them because I told him to. He’s too oppositional to participate in autism testing right now and his doctor doesn’t think he needs to be tested anyway because he can talk…after 3 years of speech therapy 🙄. Once he’s more cooperative I’m going to push having him tested again or find another doctor who will test him.
A child not speaking until 2, and needing speech therapy until age 5... seems like the doctor isn't paying much attention to these points.
I think that you are doing a great job as a parent, advocating for your child.
The school district and county health department might be able to refer you to qualified providers that take Medicaid. I believe each state has a directory of providers who take Medicaid.
• I know that the types of healthcare professionals who can diagnose ADHD varies from state to state. Doctors and psychiatrists are always listed, but some states expand the list to include: psychologists, nurse practitioners, licensed mental health counselors (LMHC), and licensed clinical social workers (LCSW). The same likely goes for autism, as well.
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The website PsychologyToday.com has a provider directory. You can filter the search for Medicaid as the insurance and Autism as the specific issue. (I live in New York state, so I copied my search web address. You could use the link, then change the search for your state.)
Beyond that, this page is a list of directories for healthcare (doctors, pediatricians, dentists, psychologists, nurse practitioners, and specialists).
Test him for autism, pathological demand avoidance, and sensory processing disorders. Perhaps reduce demands and stimulation that are triggering him to be in a fight, flight, or freeze mode. Maybe try play therapy and OT where he can learn to interact in the environment without sensory overload and rebuild connection and positive exposure to stimulation, e.g., playing with textures/sounds/shifting through games, climbing (proprioception therapy), and tumbling (vestibular therapy). Some medicines increase sensory sensitivity and irritability, etc. Supplements like magnesium and melatonin to sleep at night might help too. Check his sleeping, nutrition, and exercise levels, which can play a role in his behavior too. It can get better with the appropriate scaffolding and age but protect him and your family from the second and third-order damage that can be caused by bad schools, bad psychologists, and misguided friends and family that fail to support neurodivergence in children - that can be much worse than the underlying diagnosis
Thank you for your response. He won't cooperate for testing so his psychologist is going based on a diagnosis of ADHD and DMDD based on observations. Hopefully when he gets more in control he can be officially tested. It could be another underlying cause; I myself have autism and it supposedly has a genetic component. We can't afford play therapy or OT so we've been trying medication and lifestyle modifications which is helping but not much.
Mama- it’s so hard... Check out ADHDDUDE parent training courses. It’s is affordable and so helpful. You can also get individualized advice through the office hours. It was a game changer for my family.
Lots of great responses here and many are similar to mine. I used to be on this site posting similar type entries about my son. You're in for a long journey so try not to stress, stay positive and continue to get all the resources you can for your son. The school districts have a lot of support for kids. My son had similar issue but starting at 10. It didn't seem to be getting much better for year but just 4 months ago at 15, he improved significantly. He's not attending school again and completed his first academic credit in 4 years this summer. We're not out of the woods and I'm not sure he'll ever be "normal". Boys seem to really settle down when they get to high school if they are given the right support and therapy. Medication didn't do much for us either. Hang in there and stay positive.
YES!!! There is light and you probably are on a temporary struggle until you find why he is acting like that and what works for your son and your family. many good suggestions by others. Our story is a positive one but different from many others. We had a similar point like you describe last year. Our son was diagnosed with ADHD at 8 (about a year ago). The first several months after diagnosis were extremely difficult. I really identify with what you describe. We were stressed and scared for the future. As we tried medication he became aggressive, tantrums were daily and many. He would sometimes become aggressive, on other times would say he would leave the house, kill himself, and/or kill someone else. One day he was suspended from school because he bit someone (never had done that before). Before diagnosis and meds, he was always very distracted but always kind and sweet. We planned to change meds and I asked this board for advice. As I read through many msgs and through all I could get my hands on, I came across a recent peer-reviewed manuscript from a clinical trial. That paper showed that for kids on methylphenidate (my son was on it) adding specific amounts of magnesium and vit D decreased the frequency of tantrums and negative attitudes. I read more about it. Found out my son also has a deficiency on folate metabolism (like many kids with ADHD). By January 2023 we had stopped methylphenidate and the negative behaviors had reduced somewhat. Then started giving him those vitamins and negative behaviors reduced drastically . Than added methylphenidate back in and improved his overall attention. We also benefited after that from educating teachers on how to deal with ADHD, implementing a 504 plan, and starting psychological therapy. Today, my son is a loving kid, funny, and in a good mood almost always. We do have ocasional struggles, particularly when an adult adds randomness into his day. Thus, for someone who never believed supplements would make a big difference, I must say I was completely wrong. For us a day I forget to give my son the supplements is a hard day. We are trying to get it even better by doing parent training as my husband and I have very different styles. Be positive, tell him always that you love him despite all that is going on, and keep looking for what works for your family
Thank you for your response. I’m glad you figured out what worked for your son!
I’ve heard folate can help, I’ll look more into it. The increased dose of Intuniv has helped a lot lately, he’s seemed much happier and we haven’t had any major blow ups. I think we’re on the right track.
Glad things are improving. If you decide to add folate please keep in mind you need methylfolate (not regular folate) has the problem is with the ability to process folate into modified blocks. Modified folate is needed for neuro transmissor building
I am sorry you and your son are struggling so much. I've been there....reading your post took me back to exactly how our lives were a year ago. My son was constantly irritable and frequently explosive. There's so much sadness and grief mixed in the trauma of having your child become completely different than the sweet little person they once were.
My son has improved significantly over the past year, so there is hope. We chose to take a non-medication route and through a combination of therpy and nutritional supplements, I finally have my sweet, goofy child back. Your son is quite young and he may have some of the severe nutrient or gut imbalances that my son did. I'd recommend checking out Finally Focused by James Greenblatt and The Better Brain by Bonnie Kaplan. Greenblatt also has a website: finallyfocused.org/
The two supplements that made the biggest difference for my son were nutritional lithium orotate (1-2 mg/day) and a prescription multi-vitamin called EnLyte that contains methylated B vitamins like methylfolate (My son has a MTHFR gene mutation that makes it hard for him to use folate in it's regular form). He also takes omega-3s, zinc, vitamin D and probiotics.
Hang in there! Your sweet little boy is still in there.
I’ve heard lithium and methylfolate can help. I do think vitamin deficiencies could contribute, he has celiac and did improve slightly after we identified it and went gluten free. Thank you.
I realize this may not be useful, because you may already have a plan. I’m not aware of being too oppositional to be evaluated for ASD. I would strongly consider asking your pediatrician to refer your son to the nearest children’s hospital in your area that has a section of developmental behavioral pediatrics. He can definitely get evaluated for possible autism regardless of how “oppositional” he appears. At my local children’s hospital, our developmental behavioral pediatrics department does a comprehensive evaluation that includes a whole team: developmental behavioral pediatrician, psychologist, speech therapist, occupational therapist, and physical therapist. I would really advocate for this based on what feedback you are hearing. All kids with severe behavioral difficulties and speech delays should really have autism on the list. And you, his super awesome mom, who is working so hard for your sweet boy, also have autism? He has a higher likelihood of having autism because you have it. Virtually all academic pediatrics departments around the US accept Medicaid. If it would be helpful, I’m happy to help figure out the equivalent place in your area if you’re comfortable sharing what state/area you live in. The fact that he has responded less well to ADHD meds also makes me wonder—-that certainly would never be used to diagnose anyone. But kids with autism & adhd generally have less predictably favorable responses to treatment with ADHD meds and have more side effects from them than kids with ADHD without ASD.
Thank you for the suggestion, there’s a really good academic pediatrics hospital nearby—I’ll check it out. I do have autism, I was diagnosed a few years ago and am high functioning. ADHD runs heavily on both sides of his family too though so it could be either/or/and based on genetics.
By too oppositional to be tested I mean that on our first and only appointment with the psychologist he wouldn’t talk to the doctor at all, he just threw the toys the doctor was trying to get him to interact with and kept hitting me, pulling my hair, etc. Then he told me he was leaving and ran out the door into the parking lot. We were there all of 5 minutes. I tried to drag him kicking and screaming back inside but the doctor said he got what he needed and we’d reassess after we tried some medicine to calm down a little.
The increased dose of the Intuniv seems to be working, thank goodness. We haven’t had any major blow ups in days and no more trouble at school. He seems happier too which is all I want for him.
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Is my son a little "off"?
My 7 year old son
