Battle weary Grandma and Grandpa

Discussion in 'General Parenting' started by HMBgal, Jun 18, 2015.

  1. HMBgal

    HMBgal Active Member

    Summer is killing me already. My sig says it all (I just updated it). I pretty much had a sobbing breakdown today. I have the kids from 7 am (6 am on Thursdays and Fridays), M-F, and Saturday afternoon through Sunday evening. So yeah, with my husband and myself most of the time. The granddaughter is delightful and easy, sweet, fun, and my little summer buddy. The boy, though, is creating such havoc that we are all suffering stomach pain, sleeplessness, and feelings of impending doom pretty much constantly.

    The grandson has been unmedicated for about weeks now, just for some time to get some weight back on him. The stimulants (we've tried four) are suspected in the his increasing anxiety, explosiveness, and just general mean-ness. I can take the hyperactivity, but the mean-ness I just can't take. And the horrible cursing, hitting his sister, trying to hit me, kick me (along with anyone else that tells him "no" or asks him to do anything like brush his teeth, take a shower, anything at all that perturbs him or he feels is a demand of any kind). He was suspended 10 days last year, six days came in the last three weeks of school. His school has pretty much given up on him as far as asking him to do any schoolwork at all. No friends (they are scared of him, but there are a couple of brave souls that keep trying), can't participate in any summer camps, no sleepovers with friends, nothing.

    He was in an anxiety group, but made the rest of the kids so anxious that after the eight week program was over, they don't want him to return because of his eating paper, saying weird stuff (how his father was trying to kill him with a knife. While his father is a scary, intimidating, large man with anger issues--the doctors say he's "terrifying," he's never taken out after Difficult Child with a knife), and creating chaos. And this is while he was on the latest stimulant. He's now been registered into a social skills group for eight weeks. And he's maxed out his mental health visits with Kaiser, so they are referring him out for weekly sessions elsewhere.

    So, we are trying to hang on as long as possible to get him back to some kind of baseline and let him catch up in size. The's gained three pounds in those three weeks, and has grown nearly an inch. He physically looks so much better. He's actually hungry and sleeping.

    The doctors said to take him off the stims because it doesn't seem to be helping, and they felt that it might be making him worse. We wanted to see if the meanness would go away without the stims. The doctors have supported this for as long as we can take it. Like I said, the hyperactivity, verbal diarrhea, lack of focus we can handle (we know that won't fly for school in September), but the meanness, threatening me, kicking, throwing things hard until there's property damage, hitting his sister, I cannot handle. At all. I've had to "contain" him almost daily until he comes back to himself.

    We have Intuniv at the ready and my hands are itching toward the bottle. I've searched the forums here and like all medications, there pluses, minuses, bad reactions in some, works for others. I'm just venting and writing this out blog-style. I'm wondering if we've done him a disservice by taking him off the medications. I sure would welcome any thoughts, sympathy, a slap upside my head--whatever. Thanks, and I hope your summers are going well.
  2. ForeverSpring

    ForeverSpring Well-Known Member

    Do you think his only problem is ADHD? I'm no expert, but I did not think meanness is a part of ADHD. Eating paper can be PICA, which can be an Autism Spectrum Disorders (ASD) trait, but again Autism Spectrum Disorders (ASD) does not cause meanness. Did the boy have very unstable early years, such as infancy-3?

    I don't know how old you are, but it sounds as if he is unsafe. Do you have custody of him?
  3. HMBgal

    HMBgal Active Member

    I'm 63, but I'm very active and strong. My husband is 73 but again, active and strong. But he probably has 10 good, healthy active years left and he sure didn't sign up for this BS. But he's amazing and even though my grandson isn't a blood grandson (I married him 35 years ago, but I already had three kids and he had two, but we've always co-parented, friendly with the exes, etc). I'm an adapted PE teacher for kids with moderate/severe disabilities--mostly with kids with highly involved autism, so am fairly conversant with difficult and challenging behaviors.

    No, not his only problem, we know that, but so far there's on the ODD, Intermittent Explosive Disorder, etc. Yeah, I know how helpful that is. And he's been looked at fairly closely for Bipolar, but no one has said that yet. As far as the pica, that started when he went off the stims, so maybe sensory regulating? We've tried giving him other things as fidgets and for oral motor needs that's more socially acceptable, but with limited success. We've done better by just ignoring it. But Autism Spectrum Disorders (ASD) has been ruled out (but he's always being evaluated on the fly with the various mental health professionals), he is doing well in school, although all of this has to catch up with him at some point. He's on a 504, but there is now a manifestation determination being talked about, and he'll probably get an IEP. They wouldn't qualify him before when they tested him because he was so far ahead academically and was still small enough that they thought it might resolve somewhat, unless be more management with the services being offered at the school.

    The doctors say that dealing with his father was traumatic over time. My daughter was sharing custody (at his insistence) but after the CPS report by the psychiatrist and school, he's not parenting at the moment. So while the custody is still 50/50, his father isn't breaking our door down to see either one of the kids. He has three stepchildren and one infant son with his new wife. No, I don't have custody, but I'm the one that's here, advocating, and putting in the most hours, the most flexibility in my schedule, etc. My daughter and I are close and we are more co-parents than she is with the ex-husband. Once the new wife came on board, her jealousy and controlling nature stopped the co-parenting and the father has gone along with this because he really truly hates my daughter. He's filled with hate and anger toward a lot of people, unfortunately. My grandson is very much like his father, actually. Theres a genetic component here, for sure.

    Yes, he can be dangerous, but he will allow me to "contain" him because we've talked about it while he was calm. He's getting bigger every day, and when he's in a rage, anything goes.
  4. ForeverSpring

    ForeverSpring Well-Known Member

    Wow. I'm 61 and could never handle all that even though I'm in really good health and am also active. You have my kudos. I hope your grandson gets the help he needs. Sounds like your daughter will be on her own and also sounds like it may be for t he best, but that grandson will probably remain difficult and you may have to take different types of measures with him when he gets bigger andj stronger.

    Good luck, wherever your journey takes you!!!
  5. Wiped Out

    Wiped Out Well-Known Member Staff Member

    First off sending some hugs! He reminds me a lot of when my son was little. It sounds like you are on top of things but I know that doesn't make summer any easier. Even as a teacher there were many summers I couldn't wait to start school again-work was often my respite.

    My son did get worse on stimulants so once we had mood stabilizers and other medications on board we had to get rid of stimulants. Clonidine helped my son's ADHD symptoms more than stimulants.
  6. WitsEnd

    WitsEnd New Member

    We too are rolling the dice to see what happens with no medications, but have to wean off slowly vs. going cold turkey. It's very tempting to just stop everything so we can hurry up and see what happens, it's also very tempting to call the psychiatric up and see if we can try something else for the aggressive behavior.

    Our psychiatric never tried stimulants for my son's ADHD, we have just used Tenex (generic equivalent to Intuniv) and saw good results initially, but I suspect it could possibly be part of his agressive (mean) behavior, but who really knows, there are so many variables to everything.
  7. HMBgal

    HMBgal Active Member

    WitsEnd, the psychiatric said since the stims were not doing any good and they were fast in, fast out, we could stop them, unlike something like guafacine (Intuniv, Tenex, and others). My signature has that info in it. What is baseline? We sure don't know. We were trying to find it, but we really don't know.

    It's so heartbreaking to watch a sweet child that you love more than your own life turn into this nasty, mean creature. His younger sister has to set up her play things near me so I can guard her from his interference. Today alone, I've been repeatedly told to eff off (only the real word was used), called the equivalent of a female dog, he put his hand on my forehead and pushed my head back and this was all because...drum roll...wait for it...I told him it was time to get dressed so we could go to play a new park that he's been wanting to see. No demands can ever be made. What I actually did was put the clothes next to him and said we were going to the park so getting dressed could be his idea.

    Charming. He's due to up the dose of Intuniv from 1mg to 2mg per day tomorrow. I hate seeing the sleepiness, but jeesh, at least we all get a break. And yesterday, he chewed the pill instead of swallowing it whole. Sigh. So, since we give it to him at night, my poor daughter had to rouse him every 15 minutes for a few hours and take his pulse. And she had to get up at 5:30 to get ready for work. We are all so exhausted. He's fine, at least physically. The rest of us feel like we are in a war zone and desperately wanting a cease fire, but with none in sight.
  8. Confused

    Confused Active Member

    Im so sorry HMBgal, have you tried non stims? Vyvanse for my son let him eat and violence was down, as well as clonidine for sleep, adhd and violence issues. It does help calm the hyperness! Mood stabilizers? Also is there anyway like I mentioned under Witz post your grandson can get into a summer program? Sometimes they are worse with us but better with others, even if that lasts a month its a month of more peace! Im also getting my son a boxing punching bag to try to get him to foucus on that instead of making more damage around the house( he actually has gotten better on having less violent episodes so hopefully it will help even more so) and trying to keep him busy busy( thats hard) Hugs
  9. HMBgal

    HMBgal Active Member

    Awww, thanks for the good advice, Confused. He's started Intuniv last week. He now has the stomach flu and pinkeye, so we aren't titrating up to 2 mg until he's feeling better. Too soon to tell about this one.

    Well, we love in a smaller community and there aren't tons of options. And he has been pretty inappropriate with the people in various programs we've tried because there are rules and expectations. Yeah. No. He told the gymnastics teacher "you can't tell me what to do. You're an :censored2: and if I were your boss, I'd fire you." it was kind of funny because the instructor was a jerk, but still. So, he got bounced from there. Tried playgroups, but plays skills are pretty poor. It's his way or the highway. He signed up for two weeks of swim lessons, and we are going to Tahoe for a week.

    The punching bag actually crossed my mind doing today during an anger episode. He had a "Dammit Doll" (if you haven't heard of them, Google it if you're curious). He actually said he wanted it, but he slammed it around so hard so often that it finally exploded with a stuffing flying everywhere.
  10. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I so understand this feeling. When my son was that age we always felt like we were living in a war zone. It is beyond exhausting. I'm sorry you are suffering so much abuse. This post could have been written by me years ago.

    We did do the punching bag thing with our son and it helped some but only to a point because when he was angry he wanted to take it out on real people.

    Sending some gentle hugs your way. On the plus side my difficult child is now doing very well overall (he will always be a difficult child) so there is hope!
  11. HMBgal

    HMBgal Active Member

    Love to hear the stories that things get better. Yeah, the problem with the punching bag, too, is that we can't take it with us. The punching starts on his sister in the car, in a parking lot... Just about anywhere. So I'm not sure what skills he will learn from it that will generalize to his world at large, but at least he'll have a chance to burn off some steam when he has access to it. And it could make him stronger.... Uuuhhhhhh.
  12. I can relate to your situation, although we're much younger than you are. It's quite possible that your grandson has been misdiagnosed. Our Difficult Child was misdiagnosed with ADHD and anxiety when he was six and put on stimulants. He was constantly irritable and violent to the point that he had to be hospitalized and placed in a residential treatment facility when he was 8. He was there for a year, discharged after making no progress, home for a year and back to RT for another year when he was 10. At that point, the psychiatrist at the new RT facility decided that he might have bipolar disorder. He was taken off the stims and put on a combination of Lithium, Trileptal and Risperidone. He's much, much better now and actually generally pleasant to be around. I would suggest that you talk to the psychiatrist about mood regulating medications. If that's what's going on, it would make a huge difference. Most of these tend to cause weight gain. Our Difficult Child was extremely thin and now he's rather heavy. If you can get respite care so you can recuperate, that will help a lot, too. If he's on a Medicaid mental health waiver, they have a list of trained caregivers and Medicaid will pay for a certain number of hours per month.
  13. HMBgal

    HMBgal Active Member

    SecondTimeAround, glad to hear your boy is doing better, although it sounds like your road (and his) have been rough. No, no Medicaid here. He's with Kaiser, and is being seen by several therapists in the Child and Teen Psychiatric services for four years now. We don't have official custody, but do have many hours of care that falls to us (and that we're happy to accept) because his mother works as a dental assistant, isn't getting any child support, etc. Difficult Child refuses to have anything to do with his father right now, and has only spent two nights with him over the last three months, and it didn't go well. The CPS case against his father and step-mother isn't closed, so we are all waiting on that report and recommendation. He has so much anger and anxiety toward his father, and we have no idea how long it will be before it's resolved.

    We have no idea what's going on with this boy. So smart, handsome, sweet and caring, and then there's the other stuff. Right now he's sound asleep on the couch and it's breaking my heart that he has this "thing," whatever it is, that he's taking a drug for (Intuniv) that is knocking him out in the middle of a gorgeous day. I'm actually crying about it. I hate it. I know that this a temporary reaction to this drug, and I so hope it works for him.
  14. Would his parents be willing to file an application for Medicaid for him? Whoever has custody can file an application for a Medicaid Mental Health Waiver if he has a mental health diagnosis. Even if you can't get Medicaid for him, you might be able to get a list of respite care workers from the Dept. of Human Services and pay them out of pocket for a few hours a week. Here it's about $15/hour. You really need a break. The situation you're in is so draining.
  15. susiestar

    susiestar Roll With It

    I have a few suggestions, but they may not be immediately helpful.

    Has anyone tried a gluten free, casein free diet with him for a full 6-8 weeks? gluten-free, casein-free doesn't always help, but if it hasn't been fully tried, it may be worthwhile. It is a lot easier now, too, with all the actually good tasting products out there. I don't know why, but some kids respond like magic when they didn't get a lot of help from anything else. It doesn't change his medications either, just his diet options. You do have to work to keep him out of other foods though.

    Has he been given any evaluation or treatment for sensory integration disorder? It may not be a magic bullet, but the sensory diet can give him ways to cope with his overwhelming anxiety, excess energy, etc... other than hurting other people. To learn more about it, read, "The Out of Sync Child" and to find activities that will help, "The Out of Sync Child Has Fun". I would get the first from the library and buy the Has Fun book. Why? It is truly FUN for the entire family, and can get messy. He will lead you to the activities that he enjoys and help him, so you don't need a full diagnosis to use the book. Our entire family would ask to do the activities, and so would the neighbors - even the parents came to get involved. The book also has ways to find cheaper supplies and ways to do things because OTs don't make much $$. It is amazing and could really help, esp over the summer.

    There is more going on here with him. THis does not sound like just ADHD, Intermittent Explosive Disorder (IED), etc... I don't believe in ODD because I think it is a symptom of other problems and when they are figured out, the ODD goes away. I think a neuropsychiatric evaluation that takes 6-10 hours over several sessions is in order, and may help you figure out what the problem is. I also think that when he knows his biofather is out of his life for good, you will learn of abuse that breaks your heart, including seeing someone abused or threatened with a knife - possibly a pet or girlfriend or even himself or a sibling. At the very least, threats. Until he feels totally safe from that man, he cannot open up. I know that has to be very hard for you and your husband.

    I strongly suggest you read "The Explosive Child" by Ross Greene, and "What Your Explosive Child is Trying to Tell You" by Doug Riley. They are both excellent an very helpful and available used. I don't personally like Riley's "The Defiant Child" because I think that our kids are not so much defiant as unable to cope and behave. I believe that kids do well when they can, not when they want to. At least for the vast majority of the time. But that is me. Those first two books are incredibly helpful, in my opinion.

    I hope some of this helps. If you want resources on the gluten-free, casein-free diet, there are parents here who are amazingly helpful. I have some junk food recipes that are good, but gluten-free, casein-free never helped us. I do cook with my own homemade mixes, and with-o a lot of store prepared food, so I can help cut colors and preservatives out and make recipes into mixes if you would like that. I am also a major tightwad, so I can share tips for that also.

    Welcome to our group. I hope we can help. I haven't met you before, and am sorry about that. Take only what helps, leave the rest. At least for what I say - I expect this and welcome it.

  16. AppleCori

    AppleCori Well-Known Member

    Is there any way to have grandson watched by someone else sometimes so that you, and especially his poor sister, can have some time alone together to do the fun things you can't do while he is with you?
  17. ksm

    ksm Well-Known Member

    Has he ever had DNA testing to find the right medication? Last summer our daughter had it done, and based on enzymes in her system that metabolized the medication, they know which Rx should work best. Talk to insurance first to see if it is covered. It turned out that the three Rx she had used in the past, were in the use with extreme caution. She had too much on one enzyme, and so metabolized too fast. And essentially none of a different kind of enzyme so the Rx never worked. KSMKSM
  18. HMBgal

    HMBgal Active Member

    No, no DNA testing. Shoot, we are getting the bare bones minimum out of Kaiser as it is. I just found out that he wasn't even officially tested through their testing center for the ADHD for which they have medicating him! How does that happen? It is going to be rectified, though.

    He's been suspended three times this year already. Part of this is the school's fault and it looks like they will finally be onboard with an IEP. Overall, he seems less anxious, although it's one step back for every 1.5 steps forward. Glacial progress. Up until now, he's been fine with the academics, but the 4th grade curriculum is kicking his butt. He's falling behind in math fairly significantly now because he simply can't remember his math facts or focus long enough to figure out a problem.

    I think the guanfacine has been good for him, but we aren't holding out much hope for the Strattera helping his focus. Hopefully they put him on an IEP at long last and we get some accommodations that will work, and they can't suspend him every time another child starts teasing him on the playground to the point that Difficult Child loses it and gets suspended. It's been witnessed by other teachers and the boy has a huge target on his back. We are trying alternative recess, e.g., helping the younger kids read during the long lunch breaks. This has been good, and he gets mad at the kids that act up and won't listen to him. Tee hee. Learning moment for him, I hope. He has some teachers that love him and are really trying to help him. Maybe once he gets and IEP, they'll stop suspending him.

    That and the custody thing, (Difficult Child refuses to go to his father's house at all and my daughter is trying to get some child support--she's working two jobs and never received any child support) and her ex and his wife of two years are going crazy with the nasty emails and text to her and my husband and myself. So that's been a mess and my stomach is in knots most of the time.
  19. InsaneCdn

    InsaneCdn Well-Known Member

    For the record... Strattera isn't usually a first-line medication for ADHD - it's effectiveness is "weak", according to two psychiatrists we have used.
  20. HMBgal

    HMBgal Active Member

    This kid has been on various stimulants and they ratchet up his anxiety so much that any benefit he was getting wasn't worth the skinny nervous wreck of a kid that was falling apart before our eyes. We are giving the Strattera two more weeks (doctor's recommendation). He is calmer, less prone to meltdowns--unless he's taunted, made fun of, and made miserable by the boys at school. He's still short-tempered and sad, but better than before.

    Focus in the classroom is still a real problem. He has a wonderful teacher that is trying really hard to present different ways of having him produce anything that she can assess, but he keeps getting his butt thrown out of school, so he's missing a lot. Hopefully an IEP will prevent these suspensions. I fear that they are going to try and force him out of the school into a different placement in another school district. His district doesn't have any special classes for kids with emotional/behavioral disabilities. I'm a Special Education teacher and work with those kids and I think it be the worst possible idea to have him in a class like that and would violate his least restrictive environment in a big way. But this is a small district and they are out of compliance on so many things that it's laughable.