That's Daniel Blowing the bubbles, and Benjamin on the right with his
hand to his mouth, at the Vinnytsya orphanage - June 2002
15 months after the adoption - Moab, Utah
Five years post adoption - with the rest of the clan
Tuesday, November 6, 2007
Changes over the last 5 years ...
Nadia at her orphanage in Kryvyy Rog - July 2002
That's Daniel Blowing the bubbles, and Benjamin on the right with his
hand to his mouth, at the Vinnytsya orphanage - June 2002
15 months after the adoption - Moab, Utah
Five years post adoption - with the rest of the clan
That's Daniel Blowing the bubbles, and Benjamin on the right with his
hand to his mouth, at the Vinnytsya orphanage - June 2002
15 months after the adoption - Moab, Utah
Five years post adoption - with the rest of the clan
5-Year Adoption Update ... Only 4 months late :)
Good Grief – It’s been FIVE YEARS since we adopted Daniel, Benjamin and Nadia. On one hand it seems like yesterday, and on the other, it seems like an eternity! I was thinking about it, and wondering, “What have we learned? What’s been reinforced? What are we *still* in TOTAL confusion about??!” So here are my thoughts on the subject:
** I’ve had reinforced that it’s a WHOLE lot easier if you adopt the child younger! Nadia is now EXACTLY the age that Daniel was when we got him (Benjamin was 2 months younger). Interestingly, she is almost the exact same size as Benjamin was when we got him – She’s 1 inch and 1/4 pound smaller. Since she has had the benefit of much better nutrition for the last 5 years, she must have a much smaller genetic make-up.
Nadia does have an *extremely* stubborn and manipulative personality, and make no doubt about it, she turns on and off the pouts, glares and puppy-dog eyes in a heart beat (Mark says he’s moving out when she hits puberty!). But she is *incredibly* easier to handle than either of the boys were at this age. She understands time-outs perfectly. All I have to do is tell her something is unacceptable, and she’ll trot over, get the stool and climb onto it. So she gets a couple of minutes off for reacting so well, and consequently only spends about 4 minutes on the chair. It’s *great*.
She is reading and writing very well, and is in first grade. She will sit for HOURS and play quite happily with her dolls or color. We could NOT get the boys to sit still for 5 MINUTES at this age. They were JUST learning English, and were FAR away from learning to read, spell and write. They were not interested in legos, cars, coloring, building, watching a cartoon or movie… nothing! Now Benjamin will build intricate lego helicopters, etc., and is a bit of a video game and TV addict. Daniel still has the attention span of a gnat and can’t sit still for 5 minutes.
Nadia has *very* poor enamel on her teeth, but through vigilant brushing and care, she has only had two cavities. At the same age, Daniel had three very deep abscesses, 10 teeth decayed to the gum line and beyond repair (so they were pulled), and 4 teeth that had to be filled & crowned in order to save something. Benjamin was in a LITTLE better shape with only one abscess, 6 teeth pulled, and three filled and crowned!
** I’ve learned that timeouts are not for every child. Benjamin does *not* respond to them at all. We discovered he actually enjoys solitary time. He *hates* chores with a passion, so chores have become his consequence. Some days, setting him to washing a blind gets his bad mood worked out pretty quickly, and most days his behavior is fantastic. Other times, he spirals out of control pretty quickly, and gets pretty violent and won’t respond to anything we do. We haven’t figured out a solution for this behavior yet. We're working on it.
** I’ve learned that early displays of affection don’t necessarily mean anything. Since Benjamin was very reticent with his affection and in fact would not let us TOUCH him without his initiating it, we thought he would have trouble attaching, but he has no problems with that. He is very affectionate and very verbal about expressing it (if you can understand him – his speech is still abysmal!). Daniel, on the other hand, seemed very quick to give affection initially, but he is the one that struggles the most with attachment and trust issues.
** Benjamin handles his surgeries very, very well. He can police himself fabulously, and even though he DOES get fed up with the soft diet and "no recess/sports/etc" restrictions, he is very good about saying to friends at school, “I can’t eat that or play that.” His self-control is amazing… I must work on developing it!! When he had his activity restrictions after his surgery where they cut his jaw and he had a halo screwed into his skull, we got him into some Korean Haidong – The Art of the Sword, and he LOVES it. He started the martial arts (Hapkido) side of it recently, and was JUST allowed to start sparring (a full year post surgery). His Master says that he has never seen any other student show so much dedication and commitment. Daniel continues to really struggle with surgeries and associated issues, and he does whatever he wants, sneaks whatever food he wants, etc. If his surgeries “work”, it’s a great blessing, because he cannot handle the food and activity restrictions.
** I’ve had reinforced that yelling doesn’t make any difference. I went from never really yelling (sometimes raising my voice a BIT with Richard, but not badly), to yelling like a fish wife -something I thought I would NEVER do!!, to now, where I *can* speak calmly and lovingly, and just enforce the consequences. Do I still lose it sometimes? Sadly, yes. But I’m getting better!
** I have learned that consistency and love cannot cure all things, and to some people, being in control is the Be-All and End-All of everything. Daniel responds to discipline when he feels like it, despite our being 100 percent consistent with consequences. There appears to be absolutely *no* rhyme or reason for when he will be a wonderful, polite, respectful, incredibly helpful, delightful young man, and when he will turn it around 180 degrees (which he can do in a heartbeat) and become a diabolical monster. And I keep thinking, “Good grief – if he’s like this at ELEVEN (and he’s BEEN like this since he was 6 - only as he gets older, it just gets harder to deal with him), Heaven help us when he’s 15!!” We have had two therapists tell us they could not do anything with Daniel. He simply does *not* care what the consequences are – He is going to do WHAT he wants to do, WHEN he wants to do it. We have tried so many different angles, and there is no rhyme or reason to when things work or when they don't. BTW: One book on dealing with difficult children says they do it because they get a better response and "show", and more attention, out of you for the negative behaviors. But over-the-top positive reinforcement doesn't work with Daniel either.
It’s so incredibly frustrating because he SEEMS to be able to control it (when we're with others, etc). When he WANTS something badly enough from you he’ll be all sweetness and light, but most of the rest of the time, he can be obnoxiousness personified. The trouble is that he seems to have learned REALLY well in the orphanage to live with deprivation, and he usually doesn’t want stuff badly enough, and he can NOT deal with “carrots” that are held out that are more than about 20 minutes away. For instance, we were going to the lake with a nephew in the afternoon, and Daniel was DESPERATE to go in the boat, and had been begging for it all summer. He was totally out of control and obnoxious in the morning, and I'd warned him, then had to start enforcing, so I said, “That’s 10 minutes sitting out at the lake.” He just yelled back, “Don’t care! You’re just a freaking idiot.” etc. He ended up sitting out for 1.5 HOURS at the lake. The biggest problem is that it does NOT change anything the next time around!! I just despair. We tell him that he cannot think that he can be disrespectful and mean all day long, and then five minutes before it’s time to go to his riding lesson, become this wonderful child. But he doesn’t get it. He has missed so many lessons, activities and special events, but it still does not get through. I really believe that he equates our disciplining him with a lack of love. Of course we talk around it all until we’re blue in the face, but he STILL doesn’t get it. We don’t use bad language at home, but Daniel’s language spirals down really fast. We have tried everything under the sun to try to stop him using the stuff he picks up on the school playground - Obviously without any success :(.
During the summer, the kids had a small amount of homework and chores to do before they could play with friends. Daniel messed around doing everything else under the sun (it's that control thing), and I would periodically remind him, “I’m glad you’re having fun doing that, but don’t forget you need to do your chore and homework before friends.” But he still went AWOL when Benjamin had a friend over, and he couldn’t because his work wasn’t done. He repeatedly makes chores a hundred times harder than they need to be. For instance, he’ll refuse to put the catcher on the mower. We don’t have a mulching mower, so he then has to rake up the grass. Then instead of putting it into a bag, he’ll mound it up on the wheelbarrow, then dump it in bizarre places, like once he filled the entire window well with grass clippings. So then he had to clean it all out!! If I try to talk to him about it, like “Daniel, let’s just put the catcher on, and then I’ll help you empty it right into the garbage bag,” he’ll just respond, “NO!! Why should I?” I’ll say, “Well, because it will save you extra work, you can get your chore done sooner, and go swimming sooner.” He’ll respond, “No! Try to make me! You’re just an idiot. Talk to the butt!” and he’ll turn his butt to me, slap it, and walk away. Often, he’ll just go, “Blah, blah, blah!” and walk away. He is **so** rude – but I just don’t know how to teach him, because everything we’ve tried has failed. Of course, when he’s being disrespectful, he cannot have friends over, and then I have to deal with a total meltdown, but it doesn’t change future behavior. He can be really, really vicious (physically as well as verbally) in the way he attacks others. Sometimes, like when I’m trying to pull him off Benjamin or something like that, he’ll kick, scratch, bite me, etc., while yelling, “You stupid idiot! You Faggot!” And when his kick connects with me, “Good! You deserve that!!”
* I used to think that all these diagnoses of RAD, ODD, ADHD, BiPolar, etc., were a bunch of hooey, and were mostly parents abdicating their responsibilities. And I do believe there probably *are* still a lot of over-diagnoses and over-medicating, and there *are* still plenty of cases of delinquent parents (like the boy Daniel hooked up with last year at school – his mother AND grandmother were in jail and he was living with old GREAT grandparents who didn’t BEGIN to try to discipline him! But I feel for them - and just for the record - there is *NO WAY* I will take on caring full time for a grandchild in my old age!). However, I’ve learned that there are *true* cases where there are biological problems, and I have learned in the most forceful way that I can *never* judge what is going on in a family. I am grateful for my wonderful friends and family who cut ME some slack and don't judge me becaue of Daniel! I have also learned that some medications are LIFESAVERS. I did not tell anyone at the school that we’d started Daniel on meds, but within 2 days, I was helping out in D’s class, and his teacher thought he had found the magic way to deal with Daniel. He said, “Just look at him. Up until now, he wouldn’t sit still for 2 minutes, nor pay attention, nor focus on any task. It’s AMAZING that he’s sitting and doing an assignment like that.” I just let the teacher believe that he had indeed made a major break through with Daniel :). For both of us (the original skeptics and anti-meds couple), giving Daniel the meds HAS made a BIG difference, but again, is not a cure-all. Finding the right mix and dosage of meds is tricky (and expensive) and on-going.
The biggest problem is that we've been told repeatedly that this is not a simple situation and a "one-diagnosis" issue. They think Daniel probably has fetal alcohol syndrome and post-traumatic stress issues, and for sure he has reactive attachment issues, oppositional defiancy, ADHD, and on TOP of all those, two doctors have independently said they think Daniel is biPolar. We thought the biPolar thing was a bunch of malarkey, so did not pursue it, but we are starting to think there may be something to it. So we are trying to get into the right specialists now (but, of course, the good ones have a waiting list of about 3 years!). We *desperately* want to help Daniel, but just don’t know which way to turn. It’s been so discouraging.
** I have come to believe that Daniel does not see what he’s doing as “stealing” – He is just CONSUMED with curiosity and wanting to take things apart. Unfortunately, you have the same outcome (his taking stuff from others) no matter what the motivation! But all the consequences in the world have not stopped him from getting into stuff he shouldn’t be getting into. Just in the last little while he has destroyed (usually dismantled down to the single component level and broken much of it as he’s done so) the tape deck section of my nice stereo system, our hair trimmer, 2 computer drives, a small cassette recorder, the motor on our chest freezer, a cordless drill, the wiring, controller and some of the heads on the sprinkling system and a laptop he took from the school and COMPLETELY destroyed (and I had to go over to the school for about 5 hours a week for the whole summer to supervise him while he did work over there to work off this debt!) You should have seen the principal's face when we pulled out the dismantled laptop. He'd never seen anything quite like That! Daniel’s also taken innumerable things that, thank goodness, we have found before he’s dismantled (including a niece’s cell phone). He has to pay a consequence for those things too. He works HARD and earns lots of money, but has to pay it all to pay off debts. He sees Benjamin and Nadia buying cool stuff with what they save, and we talk to him regularly about not getting into things so he can save for a motorized scooter, and ultimately a 4-wheeler (his DREAM), but he still gets bogged down in having to pay off bills.
We tell him we think he is going to be the greatest handyman ever, and we’re excited about that, but he can NOT be taking apart things of ours that work! But we’re not getting through to him on that front either. We do try to give him stuff he CAN take apart, like we let him go at a fridge we were going to take to the dump (and I had NO IDEA you could actually break a fridge down to such a level!). He really has no interest in trying to put things back together. We have several broken things we’ve acquired from family and friends (DVD players, alarm clocks, etc), and we will get repair books and tell him, “OK – you try to fix this – it does NOT have to work, but you just have to put it back together, and then we’ll give you another item.” But even THAT doesn’t stop him getting into other stuff. I’m sure it’s part of the whole control issue thing. He wants to do WHAT *HE* wants to do, WHEN he wants to do it. He’s not the least bit interested in anything that we might give him to do.
Daniel’s burned through 2 small canisters of gas playing with the camp stove – BETWEEN the house and the shed. The other day, I checked on him when he was supposed to be asleep, and he was in his closet melting solder with Mark’s soldering iron. I regularly find him with power tools, the skill saw, drill, etc., when we have begged him to wait and only use those with dad. The long 3-month summer was completely draining on me, because I had to go outside EVERY few minutes to see what he was up to. I *KNOW* he knows what he’s doing is wrong – because he tries to hide things when I go out. I used to call out to him, “Daniel, where are you? What’re you doing?” but now I know he stashes things and hides the evidence, so I try to sneak out quietly to catch him in the action! He’s got VERY keen hearing though, and he manages to jump up and move away from things a LOT of times. We have *so* much stuff locked up, but there’s a limit to what you can put under lock and key. I’ve caught him burning stuff in his room 3 times in the last little while, and all our matches are locked up! He says he finds matches other places. One place was when he dismantled our 72-hour emergency kids. So those are removed now and locked up. (I hope we don't have an emergency need for the kits as they are no longer easily accessible!) Once those were put away, I have no clue where he continues to "find" matches...?! But if you hear we’ve all died in a house fire, don’t be surprised! We end up spending 3-4 hours going through his room on a regular basis to clean out stuff he’s taken from others. But he’s gotten more creative in stashing things. We’ve found stuff under the sink in the bathroom, down heater vents, and even behind the toilet!
Food holds no interest – he can go without it for ages and it doesn’t bother him. Like the day he took off on his bike and didn’t come back for about 10 hours – missing lunch and dinner. In order to save money, we pack school lunches, but usually let the kids choose a bought lunch once every other week or so. Daniel will make his own sandwich – so supposedly it’s something he LIKES and WANTS, but it sits in his locker until there are many bags of food in there, all moldy and gross. We’ve tried to explain to him that he NEEDS to eat to grow strong and healthy, and to do his best at sports (sports is a “draw” for him), but it doesn’t change anything. So I’ve tried not letting him buy a lunch every other week unless he’s eating his home lunch the other days. That doesn’t make any difference to him. I’ll tell him unless he eats his sandwich and fruit – he won’t be able to take a treat. “Don’t care.” And so it goes.
In desperation, we have tried every consequence in the book, but NOTHING works. For the last 6 months (because he gets into everything he shouldn’t) he has not been able to go to friends houses (although he *can* have friends here when he has been behaving OK). Last week he asked me, “WHEN can I go and play at a friend’s house?” I replied, “Daniel, you know when. It’s when you stop getting into other people’s stuff.” His response, “But that will be NEVER!” I just remind him that HE is the only one with the power, and HE can make the choices, but then he can’t choose the consequences.
** So in a nutshell, I have learned that my THEORY that “out of control children under 12 years old HAD TO mean completely irresponsible parents" has to be revised…!!!!
** I’ve learned that doctors and therapists don’t know any more than we do. They’ll say, “Oh – that didn’t work??? OK – Let’s try this….!!” We have asked for referrals from many very experienced professionals, and we get sent back to the same two therapists who have told us (after more than a year with each one) that they can’t help us. This is SUCH a drain on our stamina and resources!
I *WISH* I’d learned some of these lessons a LOT earlier. And I can only hope and pray that I haven’t contributed to Daniel’s situation by some of the things we’ve tried. Like when he wouldn’t sit in a time out spot, and the psychologist told us the “SURE FIRE way to cure oppositional defiant disorder QUICKLY”, and we tried the hard time out (locked in the bathroom). The crazy thing was that he had the option, "Do you want to sit on the time-out chair for 6 minutes, or be locked in the bathroom?" He wouldn't sit on the chair, and we got an ear full of garbage, so we'd take him to the bathroom. And then it was, "Do you want to go calmly to the bathroom, and be good in there, for 6 minutes, or do you want your time to escalate because of the way you're behaving?" Well, it may have SEEMED to work BRIEFLY, but it didn’t make any difference in long-term behavior, and it just became a battle that wasn’t garnering any positive changes, and so was not worth it. (PLUS it resulted in one COMPLETELY trashed bathroom, and one COMLETELY trashed parent as I tried to get him in there!) And like when he wouldn’t clean up his bedroom. I tried to help him, but that didn’t work, so I told him if he didn’t pick it up, *I* would, and I would give it away to some other needy child. So he yelled at me that it was MY fault for giving him too much stuff and started flinging the things out of the bedroom, saying, “Take this. And this….!” So I *did* take all that stuff, and I gave it away. But I don’t think he learned anything from it, and it may have just contributed to his feeling that he’s not loved, etc. I think this is a big problem of his, but I don’t know how to teach him that.
Some more things we have NOT figured out yet…
* Since Benjamin and Daniel were in the same orphanage for the same amount of time, is it because of Daniel’s personality? Is it a biological thing? A combination? WHAT???
* HOW do we teach Daniel how to respect ownership and other people’s privacy, etc? He just turns around and takes whatever he wants, regardless of the consequences.
* HOW do we teach the boys polite manners, eating habits, toilet habits, etc? Nadia eats with less mess than they do! The boys still spill more (and use their clothes and the chairs to wipe their hands, despite the napkins sitting on their laps)! Daniel also fights things like flushing the toilet and washing his hands. You’d think we were asking him to chop off his leg the way he wigs out about it.
HEALTH UPDATE:
NADIA - Is making great leaps and strides physically. She *is* slow in her gross and fine motor skills, but the fact that she is DOING most of it is nothing short of a miracle to us. She is chock-full of personality, is extremely smart, and is 6-going-on-18. Yikes! She *does* have a "gympy" walk, but it does not seem to phase her, nor her friends. She asked me the other day, "What does it mean if a boy at school told me I was 'hot'?"!! We decided against operating on her knees (to try to decrease the contractures). Since arthrogryposis is so rare, and those who have the condition vary *so* much in severity and abilities, there is limited and poor information on the benefits/risks of various surgeries. With the best information we have at this time, we believe that she is doing extremely well, the contractures in her knees are relatively small, and we run the risk of surgery hindering more than helping her. (When you factor in scar tissue, etc., she may be left with LESS mobility.) The debate on whether to operate on her arm continues (because of the same issues above). We *may* only gain 15 degrees of motion, and do not know whether or not the other capabilities she will lose is worth it.
BENJAMIN - Has phyrangeal flap surgery scheduled for the end of February (to increase his soft palate). This surgery is supposed to help with his nasality and speech problems. After that, he will still have 2-3 more surgeries on his lip and nose. We continue with speech therapy. It's hard because we feel that we see little progress with it.
DANIEL - Is supposed to have the LeFort surgery the end of February (the same one Benjamin had last year, where they cut the whole top jaw loose, then attach a halo and distraction device to move the jaw slowly. It means severe restrictions in food and mobility for an extended time. We don't know if Daniel will be able to handle it, so we may postpone the surgery. We've asked if there are any other options, and there are, but they are not good. Delaying the surgery will make it more difficult later. Not doing the surgery will result in severe jaw problems in the future. Even though Daniel is VERY smart, it's hard to get him to understand WHY we put him through what he perceives as garbage - mega pain and suffering, etc. After this surgery, he will need the same nose and lip surgeries as Benjamin.
Well - here endeth this chapter. Join me for the next installment if we have any great breakthroughs or anything profound to report …..!!
Also, others are asking for the “back history”, so I will try to get those things added periodically.
** I’ve had reinforced that it’s a WHOLE lot easier if you adopt the child younger! Nadia is now EXACTLY the age that Daniel was when we got him (Benjamin was 2 months younger). Interestingly, she is almost the exact same size as Benjamin was when we got him – She’s 1 inch and 1/4 pound smaller. Since she has had the benefit of much better nutrition for the last 5 years, she must have a much smaller genetic make-up.
Nadia does have an *extremely* stubborn and manipulative personality, and make no doubt about it, she turns on and off the pouts, glares and puppy-dog eyes in a heart beat (Mark says he’s moving out when she hits puberty!). But she is *incredibly* easier to handle than either of the boys were at this age. She understands time-outs perfectly. All I have to do is tell her something is unacceptable, and she’ll trot over, get the stool and climb onto it. So she gets a couple of minutes off for reacting so well, and consequently only spends about 4 minutes on the chair. It’s *great*.
She is reading and writing very well, and is in first grade. She will sit for HOURS and play quite happily with her dolls or color. We could NOT get the boys to sit still for 5 MINUTES at this age. They were JUST learning English, and were FAR away from learning to read, spell and write. They were not interested in legos, cars, coloring, building, watching a cartoon or movie… nothing! Now Benjamin will build intricate lego helicopters, etc., and is a bit of a video game and TV addict. Daniel still has the attention span of a gnat and can’t sit still for 5 minutes.
Nadia has *very* poor enamel on her teeth, but through vigilant brushing and care, she has only had two cavities. At the same age, Daniel had three very deep abscesses, 10 teeth decayed to the gum line and beyond repair (so they were pulled), and 4 teeth that had to be filled & crowned in order to save something. Benjamin was in a LITTLE better shape with only one abscess, 6 teeth pulled, and three filled and crowned!
** I’ve learned that timeouts are not for every child. Benjamin does *not* respond to them at all. We discovered he actually enjoys solitary time. He *hates* chores with a passion, so chores have become his consequence. Some days, setting him to washing a blind gets his bad mood worked out pretty quickly, and most days his behavior is fantastic. Other times, he spirals out of control pretty quickly, and gets pretty violent and won’t respond to anything we do. We haven’t figured out a solution for this behavior yet. We're working on it.
** I’ve learned that early displays of affection don’t necessarily mean anything. Since Benjamin was very reticent with his affection and in fact would not let us TOUCH him without his initiating it, we thought he would have trouble attaching, but he has no problems with that. He is very affectionate and very verbal about expressing it (if you can understand him – his speech is still abysmal!). Daniel, on the other hand, seemed very quick to give affection initially, but he is the one that struggles the most with attachment and trust issues.
** Benjamin handles his surgeries very, very well. He can police himself fabulously, and even though he DOES get fed up with the soft diet and "no recess/sports/etc" restrictions, he is very good about saying to friends at school, “I can’t eat that or play that.” His self-control is amazing… I must work on developing it!! When he had his activity restrictions after his surgery where they cut his jaw and he had a halo screwed into his skull, we got him into some Korean Haidong – The Art of the Sword, and he LOVES it. He started the martial arts (Hapkido) side of it recently, and was JUST allowed to start sparring (a full year post surgery). His Master says that he has never seen any other student show so much dedication and commitment. Daniel continues to really struggle with surgeries and associated issues, and he does whatever he wants, sneaks whatever food he wants, etc. If his surgeries “work”, it’s a great blessing, because he cannot handle the food and activity restrictions.
** I’ve had reinforced that yelling doesn’t make any difference. I went from never really yelling (sometimes raising my voice a BIT with Richard, but not badly), to yelling like a fish wife -something I thought I would NEVER do!!, to now, where I *can* speak calmly and lovingly, and just enforce the consequences. Do I still lose it sometimes? Sadly, yes. But I’m getting better!
** I have learned that consistency and love cannot cure all things, and to some people, being in control is the Be-All and End-All of everything. Daniel responds to discipline when he feels like it, despite our being 100 percent consistent with consequences. There appears to be absolutely *no* rhyme or reason for when he will be a wonderful, polite, respectful, incredibly helpful, delightful young man, and when he will turn it around 180 degrees (which he can do in a heartbeat) and become a diabolical monster. And I keep thinking, “Good grief – if he’s like this at ELEVEN (and he’s BEEN like this since he was 6 - only as he gets older, it just gets harder to deal with him), Heaven help us when he’s 15!!” We have had two therapists tell us they could not do anything with Daniel. He simply does *not* care what the consequences are – He is going to do WHAT he wants to do, WHEN he wants to do it. We have tried so many different angles, and there is no rhyme or reason to when things work or when they don't. BTW: One book on dealing with difficult children says they do it because they get a better response and "show", and more attention, out of you for the negative behaviors. But over-the-top positive reinforcement doesn't work with Daniel either.
It’s so incredibly frustrating because he SEEMS to be able to control it (when we're with others, etc). When he WANTS something badly enough from you he’ll be all sweetness and light, but most of the rest of the time, he can be obnoxiousness personified. The trouble is that he seems to have learned REALLY well in the orphanage to live with deprivation, and he usually doesn’t want stuff badly enough, and he can NOT deal with “carrots” that are held out that are more than about 20 minutes away. For instance, we were going to the lake with a nephew in the afternoon, and Daniel was DESPERATE to go in the boat, and had been begging for it all summer. He was totally out of control and obnoxious in the morning, and I'd warned him, then had to start enforcing, so I said, “That’s 10 minutes sitting out at the lake.” He just yelled back, “Don’t care! You’re just a freaking idiot.” etc. He ended up sitting out for 1.5 HOURS at the lake. The biggest problem is that it does NOT change anything the next time around!! I just despair. We tell him that he cannot think that he can be disrespectful and mean all day long, and then five minutes before it’s time to go to his riding lesson, become this wonderful child. But he doesn’t get it. He has missed so many lessons, activities and special events, but it still does not get through. I really believe that he equates our disciplining him with a lack of love. Of course we talk around it all until we’re blue in the face, but he STILL doesn’t get it. We don’t use bad language at home, but Daniel’s language spirals down really fast. We have tried everything under the sun to try to stop him using the stuff he picks up on the school playground - Obviously without any success :(.
During the summer, the kids had a small amount of homework and chores to do before they could play with friends. Daniel messed around doing everything else under the sun (it's that control thing), and I would periodically remind him, “I’m glad you’re having fun doing that, but don’t forget you need to do your chore and homework before friends.” But he still went AWOL when Benjamin had a friend over, and he couldn’t because his work wasn’t done. He repeatedly makes chores a hundred times harder than they need to be. For instance, he’ll refuse to put the catcher on the mower. We don’t have a mulching mower, so he then has to rake up the grass. Then instead of putting it into a bag, he’ll mound it up on the wheelbarrow, then dump it in bizarre places, like once he filled the entire window well with grass clippings. So then he had to clean it all out!! If I try to talk to him about it, like “Daniel, let’s just put the catcher on, and then I’ll help you empty it right into the garbage bag,” he’ll just respond, “NO!! Why should I?” I’ll say, “Well, because it will save you extra work, you can get your chore done sooner, and go swimming sooner.” He’ll respond, “No! Try to make me! You’re just an idiot. Talk to the butt!” and he’ll turn his butt to me, slap it, and walk away. Often, he’ll just go, “Blah, blah, blah!” and walk away. He is **so** rude – but I just don’t know how to teach him, because everything we’ve tried has failed. Of course, when he’s being disrespectful, he cannot have friends over, and then I have to deal with a total meltdown, but it doesn’t change future behavior. He can be really, really vicious (physically as well as verbally) in the way he attacks others. Sometimes, like when I’m trying to pull him off Benjamin or something like that, he’ll kick, scratch, bite me, etc., while yelling, “You stupid idiot! You Faggot!” And when his kick connects with me, “Good! You deserve that!!”
* I used to think that all these diagnoses of RAD, ODD, ADHD, BiPolar, etc., were a bunch of hooey, and were mostly parents abdicating their responsibilities. And I do believe there probably *are* still a lot of over-diagnoses and over-medicating, and there *are* still plenty of cases of delinquent parents (like the boy Daniel hooked up with last year at school – his mother AND grandmother were in jail and he was living with old GREAT grandparents who didn’t BEGIN to try to discipline him! But I feel for them - and just for the record - there is *NO WAY* I will take on caring full time for a grandchild in my old age!). However, I’ve learned that there are *true* cases where there are biological problems, and I have learned in the most forceful way that I can *never* judge what is going on in a family. I am grateful for my wonderful friends and family who cut ME some slack and don't judge me becaue of Daniel! I have also learned that some medications are LIFESAVERS. I did not tell anyone at the school that we’d started Daniel on meds, but within 2 days, I was helping out in D’s class, and his teacher thought he had found the magic way to deal with Daniel. He said, “Just look at him. Up until now, he wouldn’t sit still for 2 minutes, nor pay attention, nor focus on any task. It’s AMAZING that he’s sitting and doing an assignment like that.” I just let the teacher believe that he had indeed made a major break through with Daniel :). For both of us (the original skeptics and anti-meds couple), giving Daniel the meds HAS made a BIG difference, but again, is not a cure-all. Finding the right mix and dosage of meds is tricky (and expensive) and on-going.
The biggest problem is that we've been told repeatedly that this is not a simple situation and a "one-diagnosis" issue. They think Daniel probably has fetal alcohol syndrome and post-traumatic stress issues, and for sure he has reactive attachment issues, oppositional defiancy, ADHD, and on TOP of all those, two doctors have independently said they think Daniel is biPolar. We thought the biPolar thing was a bunch of malarkey, so did not pursue it, but we are starting to think there may be something to it. So we are trying to get into the right specialists now (but, of course, the good ones have a waiting list of about 3 years!). We *desperately* want to help Daniel, but just don’t know which way to turn. It’s been so discouraging.
** I have come to believe that Daniel does not see what he’s doing as “stealing” – He is just CONSUMED with curiosity and wanting to take things apart. Unfortunately, you have the same outcome (his taking stuff from others) no matter what the motivation! But all the consequences in the world have not stopped him from getting into stuff he shouldn’t be getting into. Just in the last little while he has destroyed (usually dismantled down to the single component level and broken much of it as he’s done so) the tape deck section of my nice stereo system, our hair trimmer, 2 computer drives, a small cassette recorder, the motor on our chest freezer, a cordless drill, the wiring, controller and some of the heads on the sprinkling system and a laptop he took from the school and COMPLETELY destroyed (and I had to go over to the school for about 5 hours a week for the whole summer to supervise him while he did work over there to work off this debt!) You should have seen the principal's face when we pulled out the dismantled laptop. He'd never seen anything quite like That! Daniel’s also taken innumerable things that, thank goodness, we have found before he’s dismantled (including a niece’s cell phone). He has to pay a consequence for those things too. He works HARD and earns lots of money, but has to pay it all to pay off debts. He sees Benjamin and Nadia buying cool stuff with what they save, and we talk to him regularly about not getting into things so he can save for a motorized scooter, and ultimately a 4-wheeler (his DREAM), but he still gets bogged down in having to pay off bills.
We tell him we think he is going to be the greatest handyman ever, and we’re excited about that, but he can NOT be taking apart things of ours that work! But we’re not getting through to him on that front either. We do try to give him stuff he CAN take apart, like we let him go at a fridge we were going to take to the dump (and I had NO IDEA you could actually break a fridge down to such a level!). He really has no interest in trying to put things back together. We have several broken things we’ve acquired from family and friends (DVD players, alarm clocks, etc), and we will get repair books and tell him, “OK – you try to fix this – it does NOT have to work, but you just have to put it back together, and then we’ll give you another item.” But even THAT doesn’t stop him getting into other stuff. I’m sure it’s part of the whole control issue thing. He wants to do WHAT *HE* wants to do, WHEN he wants to do it. He’s not the least bit interested in anything that we might give him to do.
Daniel’s burned through 2 small canisters of gas playing with the camp stove – BETWEEN the house and the shed. The other day, I checked on him when he was supposed to be asleep, and he was in his closet melting solder with Mark’s soldering iron. I regularly find him with power tools, the skill saw, drill, etc., when we have begged him to wait and only use those with dad. The long 3-month summer was completely draining on me, because I had to go outside EVERY few minutes to see what he was up to. I *KNOW* he knows what he’s doing is wrong – because he tries to hide things when I go out. I used to call out to him, “Daniel, where are you? What’re you doing?” but now I know he stashes things and hides the evidence, so I try to sneak out quietly to catch him in the action! He’s got VERY keen hearing though, and he manages to jump up and move away from things a LOT of times. We have *so* much stuff locked up, but there’s a limit to what you can put under lock and key. I’ve caught him burning stuff in his room 3 times in the last little while, and all our matches are locked up! He says he finds matches other places. One place was when he dismantled our 72-hour emergency kids. So those are removed now and locked up. (I hope we don't have an emergency need for the kits as they are no longer easily accessible!) Once those were put away, I have no clue where he continues to "find" matches...?! But if you hear we’ve all died in a house fire, don’t be surprised! We end up spending 3-4 hours going through his room on a regular basis to clean out stuff he’s taken from others. But he’s gotten more creative in stashing things. We’ve found stuff under the sink in the bathroom, down heater vents, and even behind the toilet!
Food holds no interest – he can go without it for ages and it doesn’t bother him. Like the day he took off on his bike and didn’t come back for about 10 hours – missing lunch and dinner. In order to save money, we pack school lunches, but usually let the kids choose a bought lunch once every other week or so. Daniel will make his own sandwich – so supposedly it’s something he LIKES and WANTS, but it sits in his locker until there are many bags of food in there, all moldy and gross. We’ve tried to explain to him that he NEEDS to eat to grow strong and healthy, and to do his best at sports (sports is a “draw” for him), but it doesn’t change anything. So I’ve tried not letting him buy a lunch every other week unless he’s eating his home lunch the other days. That doesn’t make any difference to him. I’ll tell him unless he eats his sandwich and fruit – he won’t be able to take a treat. “Don’t care.” And so it goes.
In desperation, we have tried every consequence in the book, but NOTHING works. For the last 6 months (because he gets into everything he shouldn’t) he has not been able to go to friends houses (although he *can* have friends here when he has been behaving OK). Last week he asked me, “WHEN can I go and play at a friend’s house?” I replied, “Daniel, you know when. It’s when you stop getting into other people’s stuff.” His response, “But that will be NEVER!” I just remind him that HE is the only one with the power, and HE can make the choices, but then he can’t choose the consequences.
** So in a nutshell, I have learned that my THEORY that “out of control children under 12 years old HAD TO mean completely irresponsible parents" has to be revised…!!!!
** I’ve learned that doctors and therapists don’t know any more than we do. They’ll say, “Oh – that didn’t work??? OK – Let’s try this….!!” We have asked for referrals from many very experienced professionals, and we get sent back to the same two therapists who have told us (after more than a year with each one) that they can’t help us. This is SUCH a drain on our stamina and resources!
I *WISH* I’d learned some of these lessons a LOT earlier. And I can only hope and pray that I haven’t contributed to Daniel’s situation by some of the things we’ve tried. Like when he wouldn’t sit in a time out spot, and the psychologist told us the “SURE FIRE way to cure oppositional defiant disorder QUICKLY”, and we tried the hard time out (locked in the bathroom). The crazy thing was that he had the option, "Do you want to sit on the time-out chair for 6 minutes, or be locked in the bathroom?" He wouldn't sit on the chair, and we got an ear full of garbage, so we'd take him to the bathroom. And then it was, "Do you want to go calmly to the bathroom, and be good in there, for 6 minutes, or do you want your time to escalate because of the way you're behaving?" Well, it may have SEEMED to work BRIEFLY, but it didn’t make any difference in long-term behavior, and it just became a battle that wasn’t garnering any positive changes, and so was not worth it. (PLUS it resulted in one COMPLETELY trashed bathroom, and one COMLETELY trashed parent as I tried to get him in there!) And like when he wouldn’t clean up his bedroom. I tried to help him, but that didn’t work, so I told him if he didn’t pick it up, *I* would, and I would give it away to some other needy child. So he yelled at me that it was MY fault for giving him too much stuff and started flinging the things out of the bedroom, saying, “Take this. And this….!” So I *did* take all that stuff, and I gave it away. But I don’t think he learned anything from it, and it may have just contributed to his feeling that he’s not loved, etc. I think this is a big problem of his, but I don’t know how to teach him that.
Some more things we have NOT figured out yet…
* Since Benjamin and Daniel were in the same orphanage for the same amount of time, is it because of Daniel’s personality? Is it a biological thing? A combination? WHAT???
* HOW do we teach Daniel how to respect ownership and other people’s privacy, etc? He just turns around and takes whatever he wants, regardless of the consequences.
* HOW do we teach the boys polite manners, eating habits, toilet habits, etc? Nadia eats with less mess than they do! The boys still spill more (and use their clothes and the chairs to wipe their hands, despite the napkins sitting on their laps)! Daniel also fights things like flushing the toilet and washing his hands. You’d think we were asking him to chop off his leg the way he wigs out about it.
HEALTH UPDATE:
NADIA - Is making great leaps and strides physically. She *is* slow in her gross and fine motor skills, but the fact that she is DOING most of it is nothing short of a miracle to us. She is chock-full of personality, is extremely smart, and is 6-going-on-18. Yikes! She *does* have a "gympy" walk, but it does not seem to phase her, nor her friends. She asked me the other day, "What does it mean if a boy at school told me I was 'hot'?"!! We decided against operating on her knees (to try to decrease the contractures). Since arthrogryposis is so rare, and those who have the condition vary *so* much in severity and abilities, there is limited and poor information on the benefits/risks of various surgeries. With the best information we have at this time, we believe that she is doing extremely well, the contractures in her knees are relatively small, and we run the risk of surgery hindering more than helping her. (When you factor in scar tissue, etc., she may be left with LESS mobility.) The debate on whether to operate on her arm continues (because of the same issues above). We *may* only gain 15 degrees of motion, and do not know whether or not the other capabilities she will lose is worth it.
BENJAMIN - Has phyrangeal flap surgery scheduled for the end of February (to increase his soft palate). This surgery is supposed to help with his nasality and speech problems. After that, he will still have 2-3 more surgeries on his lip and nose. We continue with speech therapy. It's hard because we feel that we see little progress with it.
DANIEL - Is supposed to have the LeFort surgery the end of February (the same one Benjamin had last year, where they cut the whole top jaw loose, then attach a halo and distraction device to move the jaw slowly. It means severe restrictions in food and mobility for an extended time. We don't know if Daniel will be able to handle it, so we may postpone the surgery. We've asked if there are any other options, and there are, but they are not good. Delaying the surgery will make it more difficult later. Not doing the surgery will result in severe jaw problems in the future. Even though Daniel is VERY smart, it's hard to get him to understand WHY we put him through what he perceives as garbage - mega pain and suffering, etc. After this surgery, he will need the same nose and lip surgeries as Benjamin.
Well - here endeth this chapter. Join me for the next installment if we have any great breakthroughs or anything profound to report …..!!
Also, others are asking for the “back history”, so I will try to get those things added periodically.
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