Seeking Support for severe ADHD in 6yo - CHADD's ADHD Pare...

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Seeking Support for severe ADHD in 6yo

Jjohns1012 profile image
19 Replies

My son is in 1st grade, but has severe ADHD. When he was in daycare, they thought he had ADHD because he never napped and had so much energy. I got him evaluated, and at that time he was diagnosed with a sensory processing disorder as a seeker. He went through OT for 7-8 months. Things were okay for awhile until he went to kindergarten sitting for such a long period of time. He has an entire team with special services at the school, 504 plan in place, he needs so many body breaks. We went through the school and pediatrician who diagnosed him with ADHD.

This past summer he started ADHD medication, which has had a lot of ups and downs to figure out the right dosage for him. It seems like he’s doing better in school… but he has such a hard time listening and following directions anywhere else. He is in OT again and goes to an ADHD therapist too… yet I feel so lost?

He has HUGE emotional outbursts, daily. He’s becoming more defiant. He’s in sports and is honestly an amazing outlet, we were hoping it would help curb some of that energy but it feels like my husband and I cannot get any relief.

I cry so much because I want him to be okay, but tonight really got to me. A couple boys on his football team said to him he was so annoying because he didn’t listen or stop when they asked/the coaches asked. It’s hard for him to relate to kids or for them to understand him, and it breaks my heart. He struggles with control over a situation, whether it be listening to someone else talk or even listening to what a friend wants to do.

My family is states away so we don’t truly have a village, it’s my husband and I with 2/3 boys who have ADHD, and we both have it as well.

I’m seeking any parent who knows how I feel or reassurance, tips, tricks, because I feel like a complete failure to help my son.

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19 Replies
Onthemove1971 profile image
Onthemove1971

Thank you for joining the group! We are excited to have you join us on this journey of raising a child with ADHD. Some of us have similar experiences as you.

I recommend that you start working with a Child Psychiatrist ( if you are not already)

We were told that when: the correct dose of medication is given at the right time and it is the right medication 60% of the symptoms of ADHD will go away. The reast can be managed with an educational plan and parent training.

There are stimulant medications and non-stimulant medication.

Our son started with a single medication before working with a Psychiatrist and they added a second medication and it was life changing.

Stimulants stop impulsive behavior, stop excessive talking, etc

Non-stimulants help with mood and focus.

Could you also see if therapy could help? Not sure if has done this there are a number of types: play, talk and cognitive behavior.

I hope these suggestions help..

One last thing, just take it one day at a time and know that as he gets more mature he will change.

Big hug for all your struggles..

Take care,

adoptivemom profile image
adoptivemom

I can 100% relate!! Especially to the lack of support!! We have no support locally either. I feel so isolated and like no one understands (I don't have any friends who have kids with special needs). You are definitely not alone - I am right there with you!

My son is 7 and has ADHD, PTSD and anxiety/depression. We are currently trying to find a good ADHD medication for him and it is not going well. He's been on aripiprizole (generic Abilify) and clonidine for a year and we added prozac 2 months ago, very successfully. His moods have stabilized well and he is happier than he's been in years. But he is not doing well at school. 2nd grade is getting harder and they want him to catch up. He is off task constantly and not cooperating with the specialists who pull him to help him catch up. The school asked if we could re-visit ADHD medications.

We added low dose methylphenidate 2 days ago. It's been awful. He's angrier and more emotionally fragile than before - which is not a typical reaction to this medication. We also have been weaning him off of the aripiprizole - so now I'm wondering if that is the culprit?? I don't think so since we've been weaning him for 2 weeks and it's only since we added the methylphenidate that he's had so much aggression. Could be a combination? I don't know but it's exhausting! We have an appointment next week with his doctor to discuss it more.

He's such a sweet kid when he's regulated. I want him to be successful and confident in school. He plays football too, but is all over the place out there too. He struggles to keep good friends. He makes them easily - very outgoing, but his impulsive and erratic behavior causes him to lose friends just as easily.

All that to say - (((hugs))) you are not alone! We are all doing the best we can for our kids. I try to remind myself of that and not be too hard on myself. It's definitely a struggle!!

Jjohns1012 profile image
Jjohns1012 in reply to adoptivemom

Thank you, I am sorry you’re dealing with almost identically the same thing. My son is on methylphenidate - and I swear since he’s been on it he’s been having the MOST intense outbursts. His pediatrician said that we can try different doses, but honestly he is more irritable that before! She said he could be “hangry” depending on the dosage. It’s helped in school but the after math of it is literally almost worse!

Purple718 profile image
Purple718

Hi Jjohns1012, I can also relate. My son is 6 and has had issues with impulse control probably forever but first identified as a problem at daycare when he was around 3. We have a great psychiatrist and have still dealt with a lot of trial and error with meds. I know how exhausting this is and how hard it can be to watch your child have to deal with side effects when you are trying to find the right combination. Also, it is a challenge when there is little compassion from school, other kids, camp, etc when your child is going through it trying to get more regulated. It is incredibly stressful. My son had angry outbursts and terrible rebound when he was on short acting ritalin. The surges as the drug went into his system and went out of his system were too much for him to handle and made his aggression much worse. It got a lot better when we switched to a longer acting formulation, but we are still trying to strike the right balance. Onthemove often recommends working with a child psychiatrist rather than a pediatrician if you have access to one. Because my son is young, we had no other choice since a lot of providers wouldn’t treat him when we started meds, so I have not worked with a general pediatrician about this issue, but I will say that his psychiatrist is excellent. Whenever I have these kinds of questions or concerns, I can reach out, and I either get a sense of how long to wait because some side effects can get better with time, or we make a change to his medication. From my experience, I would say that the gift of a working med regimen is beyond wonderful, but getting there can be extremely hard. And the fact that it can change over time as your son grows means you need someone you can trust to help you navigate the process. My son’s psychiatrist said recently that the medication helps him be who he really is rather than changing him, and this is how I feel. When he is regulated, his happiness and self confidence soar. It makes the hard times worth it. I find a lot of solace in this group because it is encouraging to know that others have had similar experiences and that it usually does get better. It also helps me to know that the trials and tribulations are normal when I am feeling down about the process. Hang in there; you are doing great.

Mommywarrior4LC profile image
Mommywarrior4LC

I completely understand! My son is 6 and has ADHD and ODD. He started meds in Dec of last year and it has been a struggle. He has some good days and some bad. I feel awful seeing him struggle to make friends. He has frequent tantrums almost daily and , is physically aggressive towards me and his sister. He’s currently on methadate and guanfacine, and when the meds wear off he starts acting up. He’s about to start 1st grade next week, and honestly I’m so nervous about him saying or doing something bad at school.

I know he can’t help it bc it comes with the diagnosis, but I fear for his future. He’s a smart kid, but I keep worrying what his adult life will be like. He’s already gotten in trouble last yr for destroying his principal’s computer and telling her he wanted to kill her family. Trust me, I’ve never felt so defeated until then. But moving forward I have learned to remind myself to teach him to calm down and come up with coping mechanisms every time he loses his temper. Such as go to his room to calm down, take deep breaths, etc. It’s not always successful but I keep telling myself to not give up on him.

It’s a daily struggle, and I’ve started to even try and tell myself to get used to all the looks I get when he curses me out or has a terrible tantrum. Don’t forget you are not a bad parent, you are not alone. This online group has helped me a lot bc sometimes I feel like I’m the only mom at school with kid who always gets in trouble. Be patient with yourself, and if you need even 5min to take a break away from your kid do it.

Praying for you to have better days ahead

skysoblue profile image
skysoblue

I don't have any specific tips but I want you to know it does get better. I (and I'm sure many others here) have felt exactly the same way. Being so worried about your child is exhausting and stressful. Take care of yourself too.

Gue_ profile image
Gue_

Sending you big hugs, you guys are doing your hardest to make it work. You mention your 2/3 boys have AdHd along with you guys. I can’t imagine, as it’s a battle for me trying to understand and advocate for my kid who I’m still trying different ways to help along with keeping my sanity intact. My child is 7, has ADHD / sensory challenges among other overlapping symptoms. At the moment I refuse to get my kid on meds, and it’s a very difficult decision to make for me. We let him be himself although it’s so very difficult at times. But if you feel meds is what your child needs by all means do what you believe is best for your child. Many times I question myself with choices, and things I assume might help my kid. I’m beyond happy when I see improvement, and devastated when it backfires. Schools might not make it any easier as I have learned everything is a long agonizing process. He has improved a bit compared to when my kid was in 1st grade.

As a family we continue to learn, adjust here & there, make sure everyone’s consistent and mindful of one another to include our interactions with my child. I’ve noticed giving my child “choices” which has seemed to help all of us ( family & school), along with keeping busy, and a routine, helps a bit.

I do want to stress that it sounds like your kid needs a IEP not a 504. Do you have an advocate to help you guys? As he gets older the tasks of each grade along with new teachers will require more of him. As he also get older if he gets in trouble or hurts someone even if it’s accidental, you might want to make sure what disciplinary actions will be enforced. Recommendation: seek an advocate - get a IEP not a 504. Sounds like your child will absolutely qualify for that ask an advocate not the school. I’m trying to get a IEP myself for my child.

You’re doing great & like I tell myself while I’m still breathing I’m going continue researching, advocating for my child, and to do everything I can to get my kiddo set up for the long haul, that way when I’m not around you will have support in place tailored to his appropriate needs otherwise no one else will.

Jjohns1012 profile image
Jjohns1012 in reply to Gue_

Sorry I meant IEP, his school has an entire team to work with him. His OT, and several other people on his team to help that we got qualified for m.

We refused medication for awhile and I don’t truly think it will be long term, his teacher last year asked us if we ever thought of medication, then talked to his pediatrician who said the long term is worse with self confidence if they don’t get on it earlier - how true that is? I’m not sure. But my oldest got diagnosed with ADHD in fifth grade, struggled allllll through sixth grade and started taking medication at the end, he’s in 7th now and it’s helping him a lot. But is it for everyone? I’m still figuring it out.

eva2022 profile image
eva2022 in reply to Jjohns1012

I read ‘Straight Talk About Psychiatric Medication for Kids’. It was super helpful for me.

Alt49 profile image
Alt49

a lot of this sounds very similar to my son. What has worked for us is the right meds (currently that’s fast acting methylphenidate 3x per day and short lasting guanfacine 2x per day), pcit (parent child interaction therapy), an IEP where he spends half the day in a self contained class for emotional regulation impairment, and a social skills group (a group run by a psychologist with similar aged kids based on the unthinkables). It’s a journey and you are not alone.

Erinlm profile image
Erinlm

We struggled to find the right ADHD medicine for my son. The side effects were so awful with every medication he tried until we found Daytrana. It is a patch that steadily releases medication throughout the day and wears off gradually when you remove the patch. He no longer has crashes and emotional outbursts when the medicine wears off. It is a small clear patch that is worn on his hip. He also take Guanfacine. I highly recommended giving Daytrana a try. I know how upsetting and frustrating this is. I wish we had tried Daytrana earlier.

ADHDWarior profile image
ADHDWarior

It’s clear how much you care about your son and how hard you’re working to support him. Please keep going and have faith in this journey. It might be tough now, but your dedication and love are making a difference.

I can relate to your experience with school, friends, and family relationships. My 6y/o child also has ADHD, and we’ve faced similar challenges. It’s not easy, but you’re not alone in this.

One resource that I found particularly helpful is the book “Disconnected Kids” by Dr. Robert Melillo. It offers a lot of practical advice and strategies that go beyond traditional therapies and medication. It might provide some additional tools and insights to help your son.

Remember, you’re not a failure. You’re a loving parent doing everything you can to help your child. Keep reaching out for support and take care of yourself too. You’re stronger than you know.

Sending you strength and encouragement,

Mamamichl profile image
Mamamichl

I feel quite similar as well. I wasn't diagnosed until my 10 yo was 3 years ago. My stepped was diagnosed about 10 years ago, and his dad soon after (though partner knew he was, just not diagnosed). My daughters emotional outbursts and rejection sensivitiy is hard trying to keep female friends.

I had to go no contact with my parents and some of my family. Luckily, I found a friend group that is accepting. Maybe ask the therapist if there are any social groups for kids with ADHD. I have seen them at counseling offices in some cities I have lived in. It is hard though to not have any grandparents that my kids can go to or have regular contact with. The friend group usually only gets together 2-4 times a year, and I try to stay in contact with some in between, but so many are so busy.

I am needing to find extracurriculars for my daughter. She loves wrestling with dad and me (so I was thinking martial arts), and she loves swimming, though her stamina isn't good enough for a team yet. sports are not her thing. She is huge into socializing and playing with friends, but when she knew she made someone angry, she avoided them for a month this summer. Her school friends were almost no contact because they were so busy, so I found a couple people to do playdate with, but she keeps making kids cry then says she is ignoring them. I don't want her to become a mean girl.

She is also quite extreme with her behavior at times with me and dad. She is either volunteering to help out and be amazing, or she's yelling at us then going no contact for an hour then coming back like she didn't yell at us. She's been in therapy for more than a year now, and I don't see any difference. She will refuse to do homework for hours, then when a friend knocks on the door, she will do it in 10 minutes. its so much to comprehend. Its even hard for me, and I am a special education teacher. It is like I have figured out how to not take it personal with my students, but I can't when its my daughter.

Jjohns1012 profile image
Jjohns1012 in reply to Mamamichl

sending you so much love and hugs. That's how my son is, he is so social and outgoing - and then freaks out over the smallest thing. We're working (therapists and my husband and I), on the size of the problem. My son has such a big heart, but just like your daughter its like touch and go - one minute he will be loving and needing me, the other is extreme and just so angry and I'm like HUH? It's so hard to not be triggered. His ADHD therapist said self esteem is linked heavily with ADHD so reward him even when we dont think he deserves it. But it's way easier said than done.

Mamamichl profile image
Mamamichl in reply to Jjohns1012

Our instincts tell us that the light switch behavior (love bombing, then outbursts) is abuse. We know it’s not, but it’s hard to fight that instinct. I think size of problem may be a good strategy for my daughter. Thanks!

Boingo profile image
Boingo

Hello, I’m sorry to hear you’re in the same boat as myself and all these great parents that have replied. I must say your son is my son at that age. My son is now 15yo; he’s been on a variety of meds since 1st grade. Some worked for a while, others were a complete disaster. We finally have him in a good way after several tries. He needed a mood stabilizer, an extended release stimulant he takes in the morning and an extended release non stimulant after school for a smoother evening. Get your son involved in martial arts, swimming, or wrestling. They are great for discipline and getting out the wiggles!

Around your son’s age, I found a licensed social worker through ADDitude Magazine which is an online platform for parents and teacher. He presented a webinar and it blew me away. He described my son to a T and gave advice on how to handle him. It was life changing. His name is Ryan Wexelblatt, aka ADHD Dude. His teachings have changed our lives for the better. He provides guidance through parental behavior management teachings. He also doesn’t sugar coat anything, he uses scientific data and is unapologetic. It’s about you stepping into your parenting authority and not letting your son rule the home. He has a $20 monthly fee website which gives you access to his webinars for varying needs. One is an executive function webinar (help with getting off video games, homework, getting ready to leave for school, etc) socially smarter, better bedtime routines. He offers live Q&A sessions for members and he’ll answer your questions, you can also set up a private zoom with him too. He’s amazing. My son is doing well; playing sports in high school, involved in the HS musical, working PT, getting decent grades and has come a long way.

We also tried a therapist for several years and found that did not help other than having an adult that listened and played with him that he really enjoyed 2x a month, The problem is my son lives in the moment. He would learn from her different strategies to apply during school/home when he would get frustrated, but he could not remember it in the heat of the moment.

Check out ADHD dude when you get a chance. I think you’ll find him practical.

Wishing you patience and give yourself grace on this ADHD parenting journey.

Giggling profile image
Giggling

Such great advice from everyone! I also felt Ryan from ADHD dude is excellent. He also has a podcast with great tips on YouTube with another specialist named Mike called the ADHD Guys Podcast, which is free and has excellent tips.My son just turned 8, and we are seeing progress. The energy level is still extremely high even with medication (Vyvanse) and lots of outdoor play, including competitive sports but the behaviour has improved from last year when it was completely off the rails. Academically he is below grade level at reading but there has been improvement there as well. He hates reading and I have learned to accept that a love of reading is not a direct correlation to intelligence. He is a problem solver so I try to work to his strengths.

He is extremely good at soccer but I have heard the kids say in the past that he is mean or too aggressive and fools around at practice too much, the fact that he gets goals is what saved him previously, so even though he is much better now with his teammates it will take some time for opinions to change fortunately he has managed to make some new friends after loosing many the year before.

Other families can be hard with their judgments because they really have no concept of what it is like (when it was only our daughter before my son was born, I am ashamed to say, I would have never truly understood either. - you really don't know until you're in it.)

The mental load of this is exhausting, but I believe it gets better as you keep going. Parenting takes a village but sometimes that village it virtual, like it is here. I can only stress that it is important to take time for yourself, even if it is getting a coffee by yourself for 20 minutes, or going for a walk alone.

We are here for you!

KitesurfingMom profile image
KitesurfingMom

Hi. I am brand new to this group and this is my first post. I was reading your post and I am in the same boat. I have a son who is 6 and was diagnosed in May we wanted to hold off on meds but just couldn’t. Started in July. We r working on dosage. The hardest is his defiant and blow outs. I often cry myself to sleep. Our doctor is talking about a drug called Intuniv but not until the Vyvanse has a good dose. This is our only child with ADHD. Sometime I feel like I am not strong enough to raise this child

Jjohns1012 profile image
Jjohns1012 in reply to KitesurfingMom

You are strong enough, the defiance is really hardy trust me I completely understand. I think what makes it harder is how we were raised versus how we want to raise our kids. When I was growing up defiance was disrespectful, I knew I couldn’t cross the line. However, with SO much information out there our generation is trying to parent differently, trying to understand, trying to listen to doctors and not pretend we know everything. It’s overwhelming!

We’re struggling with medecine, hoping to get an alternative at his next appt.

You are strong for putting yourself out there, and you’re doing the best you possibly can. It’s hard when we don’t understand, but it will get better as they grow up - so I’ve been told ❤️

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