If you have a very challenging child, how did you end up getting help?

[georgiegirl]

I am struggling with DS1 (12). It seems like no matter what we do, he’s not getting any better, only worse. He has ADHD, DMDD (disruptive mood dysregulation disorder), and probably ODD, GAD, and maybe OCD. We’ve been seeing a psychiatrist since he was around 8 or so and a therapist for the past 3 years. Both are awesome. We’ve tried different types of drugs and nothing seems to help. He has major sleep issues (always has), he’s angry, irritable, and disrespectful…and of course messy and disorganized. Every day is a challenge, and I feel like a failure and like I’m always at my breaking point. (Thankfully I have two other kids who are not like this, so I know it’s not that I’m a crappy parent. DD is typical first born perfectionist, bright, and hardworking, and DS2 is sweet and calm…he is on the spectrum, but he’s incredibly smart and easy at home.) Ds1’s therapist is frustrated because he just doesn’t seem to want to make any changes in his life or work on things. His behavior is just so awful and too embarrassing to type out. He makes family vacations miserable. (Here are the positives: School is fine, both behavior and grades. He has nice friends. He is social, athletic, and creative.) Our home life is so chaotic and unpleasant because of him. We worry that he will end up on drugs or in prison or dead. I just don’t know how to help him. We’ve tried calling academic centers to try to find a new/second opinion psychiatrist without luck. We’ve done tons of research ourselves (DH is a physician).

I was just wondering if anyone has been through something like this with one of there kids. I’m struggling and I don’t know what do do. I just want a magic pill that will turn him into the sweet kid I know exists under all the anger and irritability.


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[bisous]

I wish I had this figured out as I both identify with your struggles and I also anticipate that things will worsen as my two littlest move from childhood to adolescence!

So I'm not sure I can give super helpful advice but I did come up with a few things.

First, do you think that counseling might help YOU deal with all these issues? I'm imagining some sort of counselor that can both help you process your feelings and frustrations but maybe also give parenting advice that can be applied to the family globally and not just the tricky child? Like ways to move on from his volatility and still find peace as a family, for example. This is something that I'm looking for for me right now. I have just started my search but I'm looking for someone to help me with these two areas. If your DS could just handle his issues (with his psychiatrist and psychologist) without it affecting the whole family do you think it would improve things? I'm imagining he's in the middle of his journey. Maybe he isn't and he really needs a new team, but is it possible he's just working through a rough patch on his way to figuring things out?

The second thing I'll mention is that DH was apparently a volatile kid as an early teen. His parents talk about how tough it was with family dynamics. My DH has a very interesting family--two sets of twins and a singleton within 3 years! On top of that, multiple kids had ADHD and anxiety and DH might have had it worst of all. So they were ALL teenagers at once and at one point were all in high school at the same time. It was not a very pleasant couple of years, but it did pass. And the kids all love each other and their parents and loved their growing up years despite it all. I also think "they turned out good". They have stable jobs, good marriages and happy kids. I do think my MIL could have benefitted from counseling for her and all the stress and grief her children caused her during that time though, which is why I am looking for counseling for me right now! But my point with all this is to give you hope that both your DS can resolve his issues and also that your family can get through this!

[PunkyBoo]

I just want to offer hugs. My DS2 was like that for a long time and I am thankful every day that the ADHD meds we finally got him on (started last August right before school started) actually work. Bisous had good advice- I know counseling for me helped a lot. I've been there and I know it's so hard... I'm sorry I don't have more to offer you.

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[California]

My first thoughts as someone who works with kids but is not a Spec Ed teacher:

It sounds like you and your DH are dedicated, loving parents who have put in a ton of time and energy to help your DS. You've found a school situation that works for him, which couldn't have been easy. Thanks to the team you've built for him, he has the support in place to experience success in school, friendship, and sports. These are all huge wins, even if it doesn't feel like it when he's being mean at home.

Between the lack of sleep, sports exercise, and the effort he's putting in to control himself at school, he may simply be too exhausted to self-regulate in the evenings.

Common triggers for kids are times of transition and changes in routine. If that describes him, then vacations would be extra exhausting for him.

I am wondering:
- If his meds are messing with his sleep patterns.
- Could you observe him at school, or consult with his teachers, to find out what helps him self-regulate at school during periods of transition and stress (such as challenging assignments)?
- What is the transition to home like? Is it predictable, and does he have down time?
- Does he know how to identify when he's getting dysregulated, and what helps him self-calm? Does he have a peaceful place at home to go hide away from everyone when he needs a moment?
- If he or the therapist have any suggestions for a predictable calm down time for him after school to ease the transition home.
- If the therapist could help you develop predictable plans for what the rest of you in the family do when you sense he's starting to lose control, and when he's out of control. As a family, it may be helpful to have visual reminders of zones of regulation and feelings wheels or charts, and to practice naming your own emotions.
- What the therapist would suggest as predictable consequences/repair work to discuss with DS after he's calmed down (hours after he has calmed down, not 30 minutes.)

None of this will necessarily resolve the behaviors. But- it can be empowering and calming to have a predictable plan in place. You know these behaviors are going to happen, so why not have a response planned instead of reacting in the moment.

I'd also suggest giving your family some respite time without DS12.

Does DS have a babysitter (or relative) that he will listen to? Consider hiring that person for a weeknight afternoon once a week or a couple of times a month. Or to take date nights with your DH.

Another option that I've seen parents take: It is okay to take your other kids out of school every once in a while, and have a non-routine day having fun with them while DS12 is in class.

[pinkmomagain]

It sounds like outside of family life, he is doing well? If so, I wonder if a family therapist could be helpful.
Maybe there is something about home/family life that is dysregulating for him? (could be sensory stuff? schedule or not enough structure? expectations?)
I'd be considering if there are ways to reduce demands/stressors to see if that improves anger/irritability.

It seems like you are a fantastic parent who is doing so much to help your child!!!!

[AnnieW625]

Dd2 has inattentive Adhd (previously classified as ADD) and is newly 12. I think there is another learning disability going on here as well but it has yet to be diagnosed. We are just starting that process with the local school district. She is on Concerta now and it seems to be working okay but we still have to work with her on completing classwork on time. That will be our big focus this next year.

DD2’s worst anxiety issues and overall mood issues were when she was on Focalin, and occasionally taking Ritalin (we later found out she was spitting out the pills or telling us she was taking them and hiding them in places….we found them when we were cleaning our old house to move). She also didn’t like taking the Vyvanse because it suppressed her appetite so much (and a prior physician commented on it at each visit that DD2’s weight was too low so DD2 thought she needed to eat more so she wouldn’t take her meds).

A 8 week session of one on one therapy (over zoom) really helped her with some mild anger issues and social issues she had this past fall.

Lots of hugs to you……you will get through it.


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[georgiegirl]

My first thoughts as someone who works with kids but is not a Spec Ed teacher:

It sounds like you and your DH are dedicated, loving parents who have put in a ton of time and energy to help your DS. You've found a school situation that works for him, which couldn't have been easy. Thanks to the team you've built for him, he has the support in place to experience success in school, friendship, and sports. These are all huge wins, even if it doesn't feel like it when he's being mean at home.

Between the lack of sleep, sports exercise, and the effort he's putting in to control himself at school, he may simply be too exhausted to self-regulate in the evenings.

Common triggers for kids are times of transition and changes in routine. If that describes him, then vacations would be extra exhausting for him.

I am wondering:
- If his meds are messing with his sleep patterns.
- Could you observe him at school, or consult with his teachers, to find out what helps him self-regulate at school during periods of transition and stress (such as challenging assignments)?
- What is the transition to home like? Is it predictable, and does he have down time?
- Does he know how to identify when he's getting dysregulated, and what helps him self-calm? Does he have a peaceful place at home to go hide away from everyone when he needs a moment?
- If he or the therapist have any suggestions for a predictable calm down time for him after school to ease the transition home.
- If the therapist could help you develop predictable plans for what the rest of you in the family do when you sense he's starting to lose control, and when he's out of control. As a family, it may be helpful to have visual reminders of zones of regulation and feelings wheels or charts, and to practice naming your own emotions.
- What the therapist would suggest as predictable consequences/repair work to discuss with DS after he's calmed down (hours after he has calmed down, not 30 minutes.)

None of this will necessarily resolve the behaviors. But- it can be empowering and calming to have a predictable plan in place. You know these behaviors are going to happen, so why not have a response planned instead of reacting in the moment.

I'd also suggest giving your family some respite time without DS12.

Does DS have a babysitter (or relative) that he will listen to? Consider hiring that person for a weeknight afternoon once a week or a couple of times a month. Or to take date nights with your DH.

Another option that I've seen parents take: It is okay to take your other kids out of school every once in a while, and have a non-routine day having fun with them while DS12 is in class.

Thank you for the detailed response. I think he’s holding it together at school, and then he lets loose at home. He says he hates school…all the demands the teachers make. I know he could do better at school. He has a 504 but he doesn’t qualify for an IEP. At home, he only wants to be on devices as a way to calm down. He has an addictive personality, and he would be on his device all the time if we let him. I have the phone restricted so he only gets 1 hour of games per day and 30 minutes on the internet browser/YouTube. Other than that, he’s listening to podcasts or music. He will refuse to take out his earbuds during dinner or anytime he’s around is. It’s super frustrating because the volume is turned up and I have to scream at him to communicate. Then he flips out that Im asking him to turn down the volume or remove earbuds (because normal people talk to their family members during meals.) He does like to go outside and play with the neighbor kids. I know sleep is a big issue. He’s been on sleep meds forever since without them he will only sleep 2-3 hours a night. His concerta dose isn’t super high and it’s definitely out of his system by bedtime. His big problem is night waking and early rising, and we have arguments about how he can’t make microwave popcorn at 3;30am and wake up everyone.


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[MSWR0319]

Thank you for the detailed response. I think he’s holding it together at school, and then he lets loose at home. He says he hates school…all the demands the teachers make. I know he could do better at school. He has a 504 but he doesn’t qualify for an IEP. At home, he only wants to be on devices as a way to calm down. He has an addictive personality, and he would be on his device all the time if we let him. I have the phone restricted so he only gets 1 hour of games per day and 30 minutes on the internet browser/YouTube. Other than that, he’s listening to podcasts or music. He will refuse to take out his earbuds during dinner or anytime he’s around is. It’s super frustrating because the volume is turned up and I have to scream at him to communicate. Then he flips out that Im asking him to turn down the volume or remove earbuds (because normal people talk to their family members during meals.) He does like to go outside and play with the neighbor kids. I know sleep is a big issue. He’s been on sleep meds forever since without them he will only sleep 2-3 hours a night. His concerta dose isn’t super high and it’s definitely out of his system by bedtime. His big problem is night waking and early rising, and we have arguments about how he can’t make microwave popcorn at 3;30am and wake up everyone.


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Has he ever had a sleep study done to rule any issues out? DS was a NIGHTMARE. I kept telling the doctor he had sleep problems but they refused to listen to me. Constant waking, up early and very poor behavior that I knew was sleep based. I finally got an ENT to do a sleep study and he had sleep apnea. All of the doctors were in shock because he wasnt a typical patient. Let me tell you, that CPAP was a life saver. His behavior changed drastically after a few months of good sleep. Probably not your issue, it might be worth ruling out.

[georgiegirl]

Has he ever had a sleep study done to rule any issues out? DS was a NIGHTMARE. I kept telling the doctor he had sleep problems but they refused to listen to me. Constant waking, up early and very poor behavior that I knew was sleep based. I finally got an ENT to do a sleep study and he had sleep apnea. All of the doctors were in shock because he wasnt a typical patient. Let me tell you, that CPAP was a life saver. His behavior changed drastically after a few months of good sleep. Probably not your issue, it might be worth ruling out.

Yes, sleep study revealed nothing. Tonsils and adenoids have been removed. I think when he wakes his brain is just on hyperdrive and he can’t fall back to sleep.

[niccig]

When DS was first diagnosed with his medical condition, we worked with a behavioral therapist in the home. She was recommended by DS’ medical team. She mostly worked with DH and I on what to do/say and then worked with DS on setting up certain routines. Some of it was things we could have set up but having it come from someone else and being accountable to someone else made a difference for DS. I never needed to, but she was available by phone to give in the moment advice.

Anyways, it was expensive as she didn’t take insurance, but I feel it was more helpful than the psychologist, PT, and medication. We needed those too, but having someone come to the house once a week and help us get things together was crucial. We probably worked with her for 4-6 months weekly then tapered off. What I did like was that she, the psychologist and the medical team had regular team conferences about DS so everyone was on the same page.

Maybe someone like that could you help at home in addition to help DS is getting path medication and therapy.


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