New and could really use some advice (long)

[zba189]

I'm very new to this whole world and I would love some advice from some seasoned parents. I know this is incredibly long and wordy, but I would love and take anyone's advice on how to deal with my situation.

Here is my difficult child's background: My middle son, T, is 6 years old and currently staying in a Residential Treatment Center (RTC) after a weeks stay in an acute treatment center. What lead up to his psychiatric hospital stay was a 4 week long rage (destroying the house piece by piece and banging his head against the wall ) that started slow and built to the fact that he was no longer safe in our home. We had small issues with him for about a year(he was not a problem at school at all, I spoke to his teacher yesterday and explained what was going on asking if maybe she withheld some information and she was surprised at how far this has progressed), but we started therapy exactly 4 weeks ago and that seemed to be like putting a stick into a wasp's nest and stirring. In the past, we'd get stung every once in a while, but not a full on attack like the last month. To be honest, I thought we were dealing with an extreme case of anxiety when we first went to the therapist. I guess I couldn't have been more wrong.

T has always been a difficult child. He has always been moody. He was born with acid reflux that was a mess. husband and I were able to ease that with a diet change. In the last six months we have eased up on what he can and can't eat wanting him to make some of the choices so he feels like he has some power. He didn't walk until he was 20 months old. He also produces no human growth hormone. He receives a shot for that every night. He has grown 6 inches in a year and a half. He is also hypothyroid and is on synthroid. T is scary smart. He has a memory that is incredible. He was painfully shy last year in school, but by the end of the year had made friends. He has been in Occupational Therapist (OT) and PT when he was younger (last session he was 3yrs old). He became more aware of his short comings physically this last year.

When we first started therapy, his TDR suggested that we begin a reward and timeout system of parenting. He also said that we need to start to unemotionally parent him. This turned into a disaster, with T spending way too much time out because every time we would bring him out of the room he would destroy something else. It became like a game, with no winners. We had previously been doing a talk him down method that was taking a majority of my time that I no longer had because of a new baby.

Our house was in complete lock down mode. Locks on all doors, alarms on outside doors, locked cabinets, nothing on the walls. We looked liked we were moving.

After two weeks of this behavior, his TDR suggest we try a small dose of Prozac to ease the anger and aggression. It did the opposite and he became even more out of control. He never hurt anybody here, but did do some self harm things that were mild compared to some but scary just the same. That is when we took him to the ER who admitted him into acute care. That was last week.

The Pyschologist there suggested that he has a mood disordered and started him on Risperdal on Tuesday. He said that he was hyperverbal and that his mind was racing a million miles a minute. He repeated over and over to us that he didn't think he was BiPolar (BP) but was showing the mania side of that. T is mellower. He is also isn't so void of emotions. He cried one night saying that he understands that his wrong choices lead him to where he is at. husband assured him that it was not all his fault and that we are not angry at him. The Licensed Clinical Social Worker (LCSW) at acute care suggested that we send him to Residential Treatment Center (RTC) for 60 days to "rebuild" our relationship with him and to help him learn more coping skills and that is where we stand today.

When we checked him into Residential Treatment Center (RTC), it was not a comfortable feeling. The residents there have issues that seem far beyond T's issues. There is no one on one therapy but a lot of group sessions. His therapist made it clear to us that he would be on vacation all next week so the soonest we would be able to met with him would be the 22nd of Aug. I in the mean time bought the book "The Explosive Child" and read it cover to cover last night. It is an exact description of T. I told my husband that it might be me grasping for straws, but I could really see this working for T. We were able to sit down and pin point 4 of T's triggers. One being his older brother. We have also requested a neuro. phys. examine and they are booking 30 days out.

So here are my concerns; 1) He is now on a medicine to calm him, but we still don't have a behavioral model to follow that will help with day to day life 2) I question whether he even needs to be on this medication 3) I question if this Residential Treatment Center (RTC) program is really what he needs, no one has sat down and talked to T 4) It scares me to bring him home not knowing what to expect. My difficult child is a wonderful, fun, bright boy who I'm afraid might never come back to us in spirit but showed a side of himself that made me so frightened. 5) school starts on Monday and although they will work with him, I feel like I'm letting him suffering somewhere that he doesn't need to be. 6) I don't know where else to go from here and I have never been so uncomfortable parenting my own child in my life.

Please help me make sense of this.

 

[zba189]

I forgot to add in the body of my post that T is adopted. He was adopted domestically at 4 days old. His birthmom's health history is a family history of depression (her mother took Paxil, her father took Prozac). Her sister and nephew have ADHD. She has was taking Exeffor throughout her whole PG and she has a norverbal learning disability that accommodations were made in school. She did not do drugs or drink (and judging from the our experience with her we believe her). Our best guess is that she was raised in home with some emotional abuse due to way her parents spoke about her when we met her and the fact that she was engaged to a college student (who was away at school) when she became Preg with T. This is pure guessing, but from what we could tell, T's birthfather was a sweet talker and paid her some attention that she was seeking for those around her and not getting.

 

[tictoc]

Hi,
I don't have any real advice to offer, but I wanted to welcome you and offer some support. My son also has signs of early onset bipolar disorder and just started taking Lithium. Keep posting here...There are others here who have dealt with hospitalizations and Residential Treatment Center (RTC), who can offer more specific thoughts.

I'm also going to PM you with some information. Check your "notifications" at the top of this page to get to the PM.

 

[timer lady]

Welcome zba. You surely have your hands full, don't you? At this age, it's anyones guess as to what is going on with your difficult child (gift from god - the child who brought you here).

Now is the diagnosis merry-go-round. Whether medications are indicated or if there's something else going on. A parent can lose their mind trying to keep up with this & run their household. I hope you have a psychiatrist you trust; it's also recommended that a complete neuropsychologist evaluation be performed. (It's perfect at this time while he's in Residential Treatment Center (RTC))

As for bringing difficult child home from Residential Treatment Center (RTC), there should be a discharge planning meeting to include the crisis interventions you may need for young difficult child. The behavioral model will depend on difficult children diagnosis, his personality & general demeanor. It's all very individual & can take a great deal of time to put together. I have twin difficult children; 2 entirely different needs in parenting.

In the meantime, take this time to recharge, research & be ready for discharge date. With my adoptive children I've stayed away from the explosive child because of their hx in the birth home - instead I used the love & logic books. It's all up to what you can handle & what your difficult child will tolerate. Please know that you're doing a remarkable job with your difficult child if he's already in a treatment facility. It takes many of us here years to advocate to that level. Our mommy hearts get so torn by this.

Take care of yourself & keep us updated.

 

[JJJ]

I am a firm believer in using medications to bring crisis behavior under control. Without the crisis behavior under control, therapy and parenting get nowhere. If the Risperdal has mellowed him out, take advantage of the window that is giving you to work on therapy and developing parenting techniques that work for him. It does not mean he needs to be on Risperdal forever. Both of my boys were on significantly more medications than they are currently taking. The medications did their job, gave us a chance to reach them with therapy and parenting and they are both borderline-PCs now.

Just because he is a terror at 6 does not mean that he will be a terror at 16. When Eeyore was 5, his psychiatrist recommended we give him back to the state (we adopted him from foster care at 4) as he declared him 'permenantly damaged'. At almost 15, he is a great young man that I am proud to call son.

Welcome to our little corner of the world

 

[zba189]

Thank you so much for replies. What should I be seeing at a Residential Treatment Center (RTC) that would mean that it is a positive step towards helping T learn skills to cope and help us to learn skills to help him and us as well? I was comfortable at the acute care center, he had some new found coping skills. This place is questionable right now, but it's still early. I just don't want to leave him there to rot if I can bring him home and take advantage of the calm that seems to be had through the medications.

Is it normal to be looking for reasons why things are what they are and to mourn what use to be? This was all pretty sudden, not a real slow build up but a cannon ball into the deep end of the pool kind of things. Honestly, there have been little things here and there to let us know that things were never going to be just easy but never ever was this even in my vision.

 

[JJJ]

Thank you so much for replies. What should I be seeing at a Residential Treatment Center (RTC) that would mean that it is a positive step towards helping T learn skills to cope and help us to learn skills to help him and us as well? I was comfortable at the acute care center, he had some new found coping skills. This place is questionable right now, but it's still early. I just don't want to leave him there to rot if I can bring him home and take advantage of the calm that seems to be had through the medications.

For such a short stay at an Residential Treatment Center (RTC), I would keep my expectations low. I would look for (1) a complete evaluation preferably by a neuropsychologist to try and pinpoint what is happening (2) medication management - maybe Risperdal is enough, maybe Depakote and Risperdal are better, maybe they want to try another combo, sadly psychiatric medications are a lot of trial and error (3) respite, I would take a full week to catch up on sleep, clean the house, play with the other kids (4) parenting plan, develop a behavior intervention plan that will not only keep everyone safe - it sounds like you already have a safety plan in place - but will actually teach him how to control himself and allow him to express his emotions in a more appropriate manner.

For number 4, I would expect the therapist to meet with you and husband and listen to your concerns, give you some ideas, and guide you in coming up with a plan that is do-able for you. Then I would expect the therapist to set some goals for family therapy that help difficult child learn what the new plan is and gives you a chance to practice it. Then I would expect visits to increase and include a few short trips home and then an overnight or two prior to discharge.

One key is to have your local support in place prior to dischage. Have an appointment set with a therapist for 2-3 days after discharge. Have a psychiatrist appoinment set within the first week. Know the crisis plan! If you want to share anything with the school, try and meet with them before difficult child comes home. Decide what the 'public story' is going to be -- the whole town doesn't need to know his business.

Is it normal to be looking for reasons why things are what they are and to mourn what use to be? This was all pretty sudden, not a real slow build up but a cannon ball into the deep end of the pool kind of things. Honestly, there have been little things here and there to let us know that things were never going to be just easy but never ever was this even in my vision.

Completely normal, so is cycling through the grief process. This is rough.

 

[BusynMember]

I didn't read any other responses, so forgive me if I repeat something anyone else said.

Adopted kids are complicated because they don't share our genes and we don't always know how well they behaved during pregnancy (did she never drink, did she take no drugs?). We adopted four kids and always had complete neuropsychologist evaluations for all of them because NeuroPsychs are psychologists but with extra training in the brain, and our kids tend to be more difficult to diagnose.

From what you have said about your son, he has many physical issues which may contribute to his behavior. I would also seriously want a neuropsychologist to evaluate him for everything, but especially take a keen look out for Aspergers Disorder. To me, with a kid on the spectrum, he sounds classic. Be careful about the mood disorder diagnosis...we got that too and it was wrong and our son spent three years of heavy duty medications that he didn't need. High functioning autism is often mistaken for childhood bipolar. It takes a real expert to sort it all out. All the medications made my son obese.

Our kids don't normally respond to regular discipline because they aer wired differently. Often charts and rewards and time outs, etc. just don't do it for our children. They often need a special sort of parenting, and that starts with knowing what is really going on. Again, I feel NeuroPsychs do the best at diagnosing.

Good luck whatever you decide to do. You will be a pro at this eventually I've been at this for a loooooooooong time

 

[slsh]

Hi zba and welcome! Wow.... you have a lot of valid concerns. I'm not even sure where to jump in. I haven't read other responses so forgive me if I repeat. None of us have *the* answer, but you'll surely get a wide variety of opinions based on our individual experiences - take what you can use and ditch the rest.

The therapist's advice about behavior charts and rewards is pretty SOP. That works pretty well with- pcs. difficult children? Not so much. My difficult child actually had a very strong negative reaction to positive reinforcement. He craved negative reinforcement from a very early age (2 years), and those time outs? He loved them, especially since he would never stay in his room and therefore a 10 minute time out would turn into an hour long ordeal with me barring his bedroom doorway. Massive negative reinforcement - cha-ching, big payoff for him. I think you do have to go thru the motions and make a genuine effort with- the charts and rewards, documented well, just so that the therapist will (hopefully) grasp that it's not going to be a successful strategy and you don't waste a whole lot of time on them.

As far as unemotional parenting - BRAVO!! That's actually a strategy that I learned here on this board. We'd already been thru 4 years of therapy by the time I got here, and not 1 therapist had addressed this. My emotional reaction to my kid's behaviors was like throwing gasoline on a fire. He just ate it up. It actually gave him control of the situation, because I'd be screaming like a banshee and he'd just sit there smirking, then very calmly and intentionally repeat the behavior. Every kid I'd ever been around wanted approval and rewards - it just completely boggled my mind that thank you was the *exact* opposite. By taking the (negative) emotion out of my parenting, I was able to retain control of situation. Of course, he ramped up his behaviors to try to push my buttons, and I still occasionally failed, but I'm also very competitive and when I got into the mindset that there was no way I was going to allow my 6 (7,8,9) y/o kid send me over the edge, I was able to hang on pretty well.

I think your house in lock down is a necessary accommodation until the behaviors are more manageable. It's absolutely a lousy way to live but... it has to be done. From age 6 until about a year ago (when he was definitely never going to live here again), nothing came into this house without it's weapon factor being weighed. No heavy lamps, nothing on walls, no sharp edges, pointy things, glass objects. None of my little decorative touches on shelves or coffee tables. No vases. When he launched my coffee pot at me, I bought a metal one - yes, metal will hurt more if it makes contact, but at least it won't shatter. Knives, forks, tools, and all medications all locked up in a tool box with a keyed lock. No matchbox cars (those really sting when launched) - he got a lot of stuffed animals, nerf toys, art supplies, and legos. I know of at least one family who had to replace windows in their difficult child's room with- some kind of plexiglass thing because their difficult child kept breaking out the glass. By doing this you're not only keeping everyone safer, but you're also removing the opportunity for difficult child to impulsively destroy whatever is in proximity.

It's been years since we've played pharmacological roulette. It's very frustrating that there's no one-medication-fits-all scenario. I'm not a dr. and this is just my lay opinion, but if there is a mood disorder going on I really believe that the first line of treatment should be a mood stabilizer. Lithium is going to be out with- your son's thyroid issues. We started out with- Depakote when thank you was 6. Now, I was/am pretty much anti-medication - we did 4 years of therapy before I considered it, but things were steadily getting worse and worse. Depakote (and Tegretol, another common mood stabilizer) has an extensive database of use in children because they're also antiseizure medications. Within 6 weeks of starting, thank you's rages were spacing out from a gazillion a day (only slight exaggeration, LOL) to daily to weekly to what eventually became his best pattern of about 10 weeks of *relative* stability and then 2 weeks of revving up to a major blow out and hospitalization. Lather rinse repeat. We later added Risperdal which did a really fabulous job of further bringing down the intensity, duration, and frequency of the rages.

Again - there's no magic combination of medications because our kids all react differently. Your son's negative reaction to Prozac raises a big red flag to me - antidepressants and stimulant can provoke manic behaviors in kids. It seems like some doctors are using Risperdal to even out moods, but just based on my experience, I would want a more traditional mood stabilizer on board first.

And a note about moods in young kids that I figured out after the fact, LOL. Hindsight being 20/20, my son's depressive and manic episodes were very similar looking. I wasn't quite as tuned in to the pressured speech and racing thoughts aspect, or lack thereof, probably because I was too busy trying to just contain the kid. To me, raging = manic. But in looking back, and talking with- thank you as he got older, I think a lot of his raging episodes were born out of depression.

You are absolutely right - no medication is going to "fix" the problem. It absolutely has to be a global approach including behavior plans, as well as parenting adjustments (not disparaging your parenting, just recognizing that *no* one is prepared right off the bat to raise a kid with- such challenges). BUT - if you look at medications as a tool, especially when they are having the desired effect, then it may be easier to reconcile the use of medications. *If* the Risperdal (or whatever) is decreasing intensity/frequency/duration of rages, then it gives you that much more opportunity to teach him tools to use when he's angry/frustrated/feeling impulsive. It's a trade off.

As far as the Residential Treatment Center (RTC).... I am a big believer in following your gut. At the same time, placement in Residential Treatment Center (RTC) goes against every grain of my (selfish) maternal being (please note, my son's first hospitalization was at age 6, and we did that on average every 3 months until he was placed in Residential Treatment Center (RTC) at age 9, came home at 12, left for Residential Treatment Center (RTC) #2 at 12, came home at 13, left for Residential Treatment Center (RTC) #3 at 13, and has not lived at home since, so I'm obviously not anti-Residential Treatment Center (RTC), just know that it' a horrible decision to have to make). I think when you have misgivings, you have to very carefully and thoughtfully weigh them to ensure they're not based on your own desire to have your kid with you. Is your son safe? Are his immediate needs being met? My inclination would be to wait until his therapist is back and gets a chance to meet with- your son, see what his take is. You are absolutely right - bringing him home without a more definitive behavior management plan is a recipe for disaster. Since it is a comparatively short stay in the Residential Treatment Center (RTC), I would start now on discharge planning, even before Residential Treatment Center (RTC) therapist is back. *You* know your son best. Talk to his community therapist about behavior plans, get input from Residential Treatment Center (RTC) staff, talk to psychiatrist. What resources are available in your community (respite, crisis team, therapeutic recreation)?

Sorry - this got pretty long. You do strike me as an amazingly insightful mom, especially with so young a child (took me years to get insightful, if I'm even there yet, LOL). I think you are absolutely asking the right questions; the hard part is getting answers. There is no crystal ball (trust me on that one, LOL, I've searched for 2 decades now). I'm generally a pessimist and my parenting (and life) strategy is to plan for the worst, hope for the best. That way, if the worst happens, I've got it under control because it's not unexpected and I know what to do, and if something better happens, I feel like I've won the lottery. I think your son is very lucky to have you as his mom - feeling uncomfortable as a parent of a challenging kid is good, I think, because it will keep you on your toes so you can make the very best possible choices for him.

Last, and most importantly, make sure that you take time for yourself. Parenting in general is a marathon, and having a challenging child just makes it more stressful. It is absolutely vital that you make sure to take care of yourself both physically and emotionally.

Again - welcome and I'm so glad you found us!!

 

[zba189]

I just wanted to update our situation a little bit and also say how much comfort all the replies have brought me. I know that not everyone's stories have positive outcomes, but it makes a difference just to know that other parents have been there. It's not like I can go to my local Mom and me group and say, "Hey remember T, yea he's not away at camp, he's in a Residential Treatment Center (RTC) center for behavioral issues" and have a ton of Moms saying been there done that. So thanks to all of you for being willing to be honest with me and share your stories.

As of tomorrow, T will have been at the Residential Treatment Center (RTC) for a week. He is on a level system and is doing well. He is still learning the rules but is making an effort to follow directions. He has not shown any of the behaviors there that landed him in treatment to begin with. Honeymoon, perhaps? That is positive in some ways, but distressing in others due to the fact that our benefits adjuster with our insurance wants "real" reasons for the insurance to be paying out. I was naive with regards to the fact that insurance is in the driver's seat when it comes to mental health care.

T is meeting with an Occupational Therapist (OT) this week and is currently scheduled for a Neuro. psychiatric. in the next three weeks. The Residential Treatment Center (RTC) says that even if he is released before the test date, they will assist us with the testing. We have visited him throughout the week and have taken our oldest easy child with us to see if he triggers him. easy child has been on edge and dealing with his own stresses due to school starting and a new schedule so his behavior has been less than appealing but difficult child has handled himself and his visits with easy child really well. T is still on Risperdal, but we have a phone consult with the psychiatrist some time this week as well to discuss medication.

I have spoken to with his school and the admin. have been amazing. They are comfortable with an IEP as soon as I'm ready to formulate one. They have said they will not disclose any information about why T is missing school to his teachers until we as his parents are ready to share information and that it is up us how much information we would like to share.

I'm more at ease with things in the last few days. I still worry about what the future holds but at this point I know that husband and I have started the wheels in motion to at least get some answers to questions that we have really had all along with difficult child. I have come to the conclusion that denial might seem easier in the beginning but that it really is just standing still. We have a long hard road ahead of us and I'm sure we will make mistakes and wonder what might have been but we are at least heading somewhere now.

If you have anymore advice for me, please share. I'm really thankful to find a place that is so willing to help.

 

[TerryJ2]

Welcome, ZBA. I have read all these notes with interest and honestly, have nothing to add, but welcome and {{hugs}}.