9yo ADHD and at my wits end

[Katstacarlso]

my son was diagnosed with ADHD around age 5 (late pre-k/early K) just as the pandemic hit and the world locked down. It was hell and there were no resources to help us. He is sweet, sensitive and whip-smart… but can’t seem to get out of his own way.

We started medication at the end of 1st grade at age 7 as his ADHD/impulsivity was affecting his ability to learn at school and really impacting our relationship with him at home (tantrums, inflexibility and trouble with transitions of every kind, both large and small).

He was in a pretty good place until the start of 3rd grade (this current academic year, he turns 9 next month) and for some reason it feels like the wheels are coming off.

He is volatile, unpredictable, “screechy” and overall unpleasant for us (his family) to be around. He has never been more out of control - and I can’t figure out why. Is it pre-puberty hormones? Increased academic demands? He has a good number of friends, and academically is doing ok-ish (has IEP support).

I love him but I dread every day, and never know what to expect - and it’s taking a hard toll on our family unit.

I just feel like many days despite our constant efforts - we make no progress at all, his behavior is getting more impulsive and dangerous/defiant (running off without telling us where he’s going, swearing at us and being disrespectful, no regard for rules/expectations at home but does “ok” at school.) Do things get worse before they get better? He is also very sensitive to med changes and doesn’t tolerate most stimulants well. He is on methylphenidate 20mg once daily and guanfacine 0.5mg twice daily.

I’m so depressed. I just want to enjoy life and not feel like a total garbage mom… but I’m so burnt out and every day feels like an insurmountable challenge.

Any time I reach out for help (have tried therapists, small group social skills/executive function coaching, meds, karate/exercise, PT/OT) NOTHING seems to benefit him for long. Has anyone else experienced this? If so, what did you do to help them? And… How did you keep yourself sane?

All input/advice welcome, I’m at the end of my rope and looking into reform/boarding schools because I’m tired of fighting constantly and feeling like I’m failing him as a parent.

[momwifedaughtersis]

Hi, I feel the pain in your note and identify with a lot of what you’ve said. Our son is 11 and struggles a lot with disregulation and constant negativity. I too feel frustrated and wonder Why does everything have to be so hard!!!?? I complained to his psychiatrist a while back, about this feeling that he routinely turns what should be a pleasant morning, family outing, whatever into total misery. The doctor was sympathetic but said “the kids I worry about, the ones that really break my heart, are the kids who are so depressed that they have no excitement or enthusiasm or interest about anything. When I talk to your son, he is animated, passionate…” I think about that a lot. It wasn’t super comforting but he did make a point.

For me, I see a therapist who has raised 2 neurodivergent kids and really gets it. It is really hard day-to-day and I feel so much pressure, bc I know a predictable routine is very helpful for my son ( but I find it hard to stick to). The constant work of trying to preview everything with him (eg, remember, this weekend we are doing X not favorite activity) and being his emotional support when he is flipping out- it’s exhausting. It is better now at 11 than it was at 8-9 yo and I try to remember that he’s just scared and lost inside all that bluster. It’s hard. That is scary, the part about your son running off… we haven’t had that experience. I wonder if there’s any fun activity that he would join in, either 2 of you or all of you - like running around on a beach or big field, listening to his favorite music really loud, idk, something to work on family connection and making him feel loved and included with minimal pressure. For you - are you able to do a one night solo escape to a hotel? I hear you on the burnout. I feel so guilty for losing my temper, snapping, being impatient. But be kind to yourself, if you mess up, apologize and try not to waste precious energy beating yourself up. Sending virtual support your way ❤️

[Katstacarlso in reply to momwifedaughtersis]

Thank you so much for your thoughtful response. I think sometimes it helps to just hear (even virtually) from other parents who really get it! What your son’s psychiatrist said about depressed kids is definitely reassuring to me, as my son is super animated too, has lots of friends and seems overall happy - he’s just unpredictable and explosive at home and it’s the defiance/parenting piece that feels most challenging. He actually ran off again on Halloween night (thankfully followed our friends and neighbors) but it was very traumatic and scary trying to find him (took an hour of searching the neighborhood and really impacted his little sister - which is so hard).

Someone told me to request a functional behavioral analysis at home, so I’m planning on looking into that for now (I guess it can be included in his IEP) and just praying it actually helps give us some tools and insight.

Thanks again for sharing and being open about parenting burnout and how hard the day to day can be. I know we’ll get through it somehow!

[Amethyst222]

Hi, my son is 9, almost 10. This past year has been extra tough, and the ADHD has become a lot worse. Moodiness, anger, and bad attitudes have become common. He is not on any meds (but that's another story). I saw you mentioned pre-pubescent behavior, and after a lot of my own research, I am pretty sure that the increase of my son's issues has to do with this. Also, I personally face a lot of mood issues with PMDD, and his mood swings seem hormonal.

Not to say he was an angel before age 9! Just that this has been an increasingly tough year, and things have really changed. I am also (slowly) learning how to work with him better. I recommend some googling like: "parenting tween boy", to get some ideas on better ways to deal with their behavior. It's a big change for them, and us, I feel for you, and with my PMDD (like right now), I am also at wit's end half the month!

Also, I don't know about the meds he's on, but I know some stimulants can make me feel edgy and irritable...wondering if perhaps he's having a sensitivity?

[Katstacarlso in reply to Amethyst222]

Thank you so much for taking the time to respond. I never expected this age to be so tough! I suffer with ADHD myself and he has been so disregulated this school year that I’m starting to become undone. I recognize it, have been listening to/reading lots of Ross Greene and have been working on myself with my therapist - though mostly for my son’s sake.

He has been on the same meds (low dose metadate and guanfacine) since he was 7 and it’s the only thing that helped him… higher doses and other meds like adderall made him super irritable, but he was doing so well on his current regimen - not sure what changed. Everyone has been saying 3rd grade is the first big academic year too, so maybe that’s a big piece of this? Best wishes to you and your almost 10 year old!!

[Amethyst222 in reply to Katstacarlso]

Yes, my son is in 4th grade and has a really tough teacher this year, so I think that's adding to everyone's stress. It's been a struggle getting this teacher to be accommodating too. He is generally well-behaved in school, but when he's home he lets it out however he can.

I too have just started with a therapist, hoping to gain some ideas. I've been pretty blindsided by the changes lately too, I thought I had a few more years to enjoy his childhood! But I do notice when I change my approach I get better results, and can still see his sweet side now and then, which I am still enjoying every moment of while I can! I'll check out Ross Greene. Best wishes to you, and feel free to message me if you need to vent!

[Tmom46]

Hello. First off know that you’re not alone. There were definitely plenty of transitional times for us with our son when I just felt like I wasn’t doing enough or was getting it wrong. Find something you can do for yourself even if it’s just taking a bath or working out with head phones on so you have a few mins of peace...or hide on the side of your bed and cry which I definitely did when I was at my limit. You need a calming space so you can help your son as calmly as possible. And remember that you truly love him otherwise why would you be so upset and frustrated. Find a way that works for you and him to simply say “I love you” a few times a week especially when he’s not expecting it. He needs that reassurance bc I’m sure he’s just as frustrated as his actions show.

My son is in college now and handling life with much less help from us but we still worry about him and push him to eat well, engage in the right ways and of course always go to classes. Be somewhat relieved that you still have some control over his surroundings. And 3rd grade is still so young. He has a lot of time to work through his frustrations and find the right ways to manage himself.

We did not start meds until 5th grade bc even though it was hard we wanted our son to have to try to regulate himself before we started him on meds. He’s thin and very sensitive so we worried about the side effects. Our son is super bright and the best success we’ve had has been in letting him find his own path. Typically not even close to the normal path but when he felt strongly about something (like his own way to complete an assignment that didn’t feel like it conformed, his personal twist on helping or joining a school event, and his interest in a specific sleep away camp) we let him take the lead. Those were some of the best moments for all of us bc he owned the decision and when it worked he felt the full reward.

Meds are tricky and I personally struggle with knowing if he’s taking the proper amount and if it’s helping way more than hurting. I no longer have control over that so I have to trust that my son now can make those choices for himself. But each new med has a built in time of balancing and those are annoying days.

From a practical side, we did OT/Social groups/acupuncture/CBT..and plenty of executive functioning tutoring. Despite my son being bright he still struggled to get his work done well especially in 3rd grade but that came along as he got older.

Looking back, I wish I had let some of that go. It’s not that important that he get perfect grades in 3rd grade but much more important for him to figure out how to manage his emotions and his requirements at a time when failure won’t ruin his GPA. There is so much social transitioning happening and an academic bump for the 1st time in 3rd grade. Those alone can be overwhelming.

My advice for you right now would be to take a deep breath. Then try a trick I heard when my son was really young. “Ladle on compliments” like soup. Find anything to tell him he did well no matter how small. If that helps to break the negative cycle use the calm times to talk about what makes him happy and what makes him frustrated. Try to find a common ground to make things easier for both of you.

Also, for any therapy try to find a therapist that your son clicks with. My son had a development pediatrician we found who became like a mentor to him. He’s outgrown him as a Dr but saw him before leaving for college to check in and say thank you in his own way. Finding connection was the only way to get my son to do things (like acupuncture) that he really didn’t like. CBT and this dev pediatrician (lots of influence from eastern medicine) were the two that worked best for our family.

Good luck and sorry for the long winded reply. it’s a marathon for sure but well worth it!

[Amethyst222 in reply to Tmom46]

I love that -- “Ladle on compliments” like soup. I try to remember to do this, especially lately that his teacher is not very supportive, and my son's confidence has been affected. He's been saying lately he feels like he can't do anything right. 😢

I will use the ladle visual to try to help me remember. Thank you for the tip!

[Katstacarlso]

Thank you so much - this post means a lot. You got me at the “hide at the edge of your bed and cry”… I love him so much, these daily struggles lately are tearing me up inside. It’s reassuring to hear parents whose kids are older and thriving. I have worked for years as a trauma nurse so the idea of him being on his own in the real world some day is a really scary concept for me, given his impulsivity and thrill (dopamine) seeking behavior.

Thankfully he is smart and kindhearted, so I’m hoping we can fix things. Was a developmental pediatrician super helpful for his ADHD? I have been looking into this for my son. He currently has a regular pediatrician and a pediatric psych NP (but she mostly just manages his meds).

We normally have (or had until recently) a pretty good relationship, but I will be sure to ladle on those compliments. Thank you again 🩵

[Tmom46 in reply to Katstacarlso]

For us the development ped was a huge help but I think it was more the connection he felt to the Dr. He always treated my son with respect for his feelings and where he was at at the time.

He also uses a lot of eastern medicine ideas in his work and not just meds so that was better for our family.