Need insight please.

[Hanging-On]

I haven't been here in a long time. Very busy dealing with difficult child's downward spiral, financial devastion due to the economy, trying to protect easy child and our proterty, trying to repair property, basically chaos management, etc.

My question is how to stop difficult child ALWAYS reverting back to disfunctional behavior with me. We can NEVER stop this dance and move forward, if he doesn't stop reverting. Below is what's going on.

difficult child is ppd-not otherwise specified, severe adhd, severe sensory integration dysfunction, dyslexic, below average but not borderline IQ, mood disorder-not otherwise specified, cognive disorder due to anoxia.

Well long story short, difficult child went critical again earlier this year. (He's almost 10, but his adaptive functing is around 1/3 of this. easy child is 6.5). Violence to himself, to his little brother, and to property. Running away at night, and me calling 911 every night for a week. He's in a Residential Treatment Center (RTC) 6hrs away, and he was slowly getting better, after really going critical there. Self injury like I've never seen, smashing walls and going through windows. Well they sent all the kids home this holiday. The place closed down. I've never heard of such a thing. I was positive about him coming home, because our visits (over the last 4 months) were good. He's communiticating well with me (in full sentences), following instructions, extremely polite (but he's always been polite), not demanding, not manipulating, not threatening, etc. Well once we get home real life hits again...chores, responsibilities, no money, and no security doors, etc. And his demands, "I'm bored, take me to ______" (fill in the blank). Then I try again to explain that we don't have the money to go there, or the gas to waste. Plus we all went to dinner and the movies when he came back, and that was the most I could do. Then he went to a friends birthday party, but he's always pushing me to ENTERTAIN him to buy him something, etc. His little brother doesn't do this, he finds things to do to entertain himself. But difficult child pushes and demands that I "take" him to fun places, and he's relentless in this. And if he doesn't get what he wants he starts the manipulation, threats, etc. So the stress starts to build with that. Then he reverts back to his nonverbal communication of grunts and pointing, which is very frustrating and stressful because he gets mad that I don't understand what he wants and then I get frustrated with him because HE CAN TALK. But with me he ALWAYS reverts to AS nonverbal communication. This was ok when he was a toddler and not in school, but it's maddening to me when I see him talking to everyone else but me. And that for 4 months at the Residential Treatment Center (RTC) he's been talking to me, but he comes home and everything goes back to the way it was. Driving him back to Residential Treatment Center (RTC) was a nightmare, he kept opening the door to jump out as we're going down the highway. He was biting himself, me, and car. He was kicking everything, throwing stuff out the window, etc. He kept threatening to do something I was trying so hard not to buy into it and either ignored him or said "go ahead". I kept calling the Residential Treatment Center (RTC) about this and what to do. I stopped when I saw a cop to ask for help........and NOTHING!!!! In the end it was me (alone) having to try and get us there safely. A normal 6hr trip took 11 hrs, then I had to turn around after dropping him off and go home to deal with my other responsibilities.

I'm exhausted, furious, very concerned about him always reverting with me and what this reality may mean. I have always been determined to find out what's wrong and to fix all of this, so that I can try and give him the best life possible so he could be ready for adulthood. But I'm very confused I don't know how to get him from reverting back to this dysfunctional dance HE always initiates with me. "I" don't start it. I don't have any desire to play games....I never have. I HATE playing games with people, I'd rather walk away. I have zero tolerance for games, threats, manipulations, being stuck in the same old situation without growth.......so I know I'm not doing it. Plus easy child and I get along great.....it's difficult child who's always starts the turmoil. I can't stand the negative attention seeking anymore, and it's gotten worse I think because I refuse to acknowledge it. I think he's gone to such extremes of violence, threats, manipulation, destruction, etc because I wont buy into his games......period.

I need help in solving this, becuase the experts aren't solving it. They sent him home without any backup or support even when I told them we need someone in the home with us durring waking hours. BUT I NEVER GET THIS..........NEVER.

So, once again I'm trying to do their job......trying to solve this so that my family can live in love and peace.

So, how do I get him from reverting back to these dysfunctional behaviors or worse.....develop worse one's?

 

[BusynMember]

Hi.
I have a son on the spectrum. Although he has been upgraded to Aspergers, who knows. His initial diagnosis was Pervasive Developmental Disorder (PDD)-not otherwise specified. You can not "fix" a spectrum child. They are intristically wired different. What you can do is change the way you relate to him. If you don't, things may not improve. If you do, with the help of an autism expert, you can help him and yourself A LOT. Self-harm in an autistic child means "you don't GET me. I can't TAKE it!" It's common and not the same as a "typical" children doing it. They may have great vocabularies (my son does), but they have communication problems, ESPECIALLY when they feel stressed and the self-harm is often the only way they can let you know how miserable they are. They live in a world that is often very confusing to them. Although I won't say your Autism Spectrum Disorders (ASD) son isn't manipulative, I really do think you are thinking he is more manipulative than he is. Instead, I think he is a kid on the autism spectrum who is expected to act like a kid who isn't. And he can't do it because it's like forcing yourself to change your brown eyes to blue. It's who you are.

in my humble opinion, almost all the issues you are having are related to one thing--Pervasive Developmental Disorder (PDD)-not otherwise specified. I don't know why he got tagged with all the other labels that are a part of Pervasive Developmental Disorder (PDD)-not otherwise specified, such as sensory integration. It's a given that Pervasive Developmental Disorder (PDD) kids have sensory issues, attention problems, and very low frustration levels. It's all part of the disorder. My own son is never in meltdown, but I have really done a case study on Autism Spectrum Disorders (ASD) and I know what it is. You are trying to explain things to your son in a way that "typical" kids would understand and accept. Unfortunately Pervasive Developmental Disorder (PDD)-not otherwise specified kids are wired differently. And when they are upset they DO become non-communicative. Mine won't grunt, but he'll start to stutter very badly. Is your son, in this program, getting help SPECIFIC to Pervasive Developmental Disorder (PDD)-not otherwise specified? It has been my experience that behavioral management, levels, points etc. do not work with kids who have Pervasive Developmental Disorder (PDD)-not otherwise specified, which is a neurological disorder, not a psychiatric problem. If it is treated as one, it usually doesn't work. All kids on the spectrum need spectrum specific interventions and therapy from people who are very savvy about the spectrum. I think your boy means well, but is just so frustrated and confused that he explodes. I'm not sure, of course. All spectrum kids are different. But they all need a different type of parenting and discipline. Comparing him to his brother who can entertain himself is not fair in my opinion. Spectrum kids are very imagination-imparied and my son and other spectrum kids I know often have trouble amusing themselves unless they are playing videogames or watching television. Those two things fill in the lack-of-imagination gap that haunts our kids. They are also developmentally delayed. That's what Pervasive Developmental Disorder (PDD) means: pervasive (in all areas) developmental disorder. My son is quite young for almost sixteen too. You can not hurry it.

I don't know what sort of place he is at, but I hope they understand autism. Treating him as if he just needs behavioral therapy will probably not work once he is out of there. It could work while he IS there because it is very structured. But in my opinion it won't teach him the skills he needs once he is released. All of this is JMO. Good luck!

 

[smallworld]

I'm sorry you had such a difficult time with difficult child over the holiday weekend. I don't know if I have any true answers for you, but I'm wondering if it's possible that difficult child can maintain with the strict structure of the Residential Treatment Center (RTC), but can't do that at home, where it's not possible for any parent to replicate that structure.

Can you insist that the Residential Treatment Center (RTC) help you come up with a backup plan prior to difficult child's next visit home? Do you have an adult relative or friend who can stay with you the next time difficult child visits? Or maybe there shouldn't be home visits until he's further along in his treatment?

 

[JJJ]

Hopefully he has more time in the Residential Treatment Center (RTC). With Kanga, her interactions with me were the same-ole-same-ole during phone calls and visits for almost a year after she started at the Residential Treatment Center (RTC). She still struggles in her relationship with me more than anyone else. Apparently this is common.

I wish I had some suggestions but I think the Residential Treatment Center (RTC) has a lot of work to do before he can have a successful home visit. Just wanted to let you know you are not alone.

 

[Hanging-On]

Thanks everyone. I guess my word "fix" wasn't a good choice, but I'm doing everything I can to help him. About the manipulation: every doctor who has observed him has told me that they have NEVER met someone who is so expertly skilled in manipulation. It truly blows them away. But his father and uncle are the same. I think it's a gene they carry or something. And yes, the threats are very serious, and advanced and can be violent. So sadly, I feel this is something that he got from his dad.

I am thinking the same thing that he needs a team around him to re-enforce the rules, and a single mother has no chance of doing that. I have repeatedly asked for daily inhome help, and never get it.

Oh, and we have no family in over 1500 miles. It's just me and the kids here. the support issue has been a big problem.

I just have to figure this out, and try to find solutions. I heard of a new AS Residential Treatment Center (RTC) in the state. I'm going to research that.

 

[susiestar]

I am so sorry that it was such a traumatic time. in my opinion it was WAY too soon for such a long visit. It probably set him back so far he is at the beginning of where he was when he first when into Residential Treatment Center (RTC) or even farther behind. It was irresponsible of the Residential Treatment Center (RTC) to send him home so soon for so long. Esp over a holiday where kids build up expectations that are often so far beyond what reality can give. That disappointment, combined with an inability to self-soothe or even to entertain himself, is a real recipe for the kind of disaster you have.

Refuse home visits for a while. He needs time to recover, and YOU do too. You also need to learn HOW to act on a home visit. You will NEVER get him to the level where he can safely return home if you continue to do movies and eating out and other fun stuff. Schedule ONE activity the first day he is home. Period. After that (movie, a meal out, trip to a store, whatever) you should spend time at home as a family. Do whatever you NORMALLY would do.

If he reverts to previous behavior, you know he isn't ready. Be SURE to tell staff how it went HONESTLY. Don't sugar coat anything (LOTS of parents do this), mention EVERY problem! If you don't, then they can't work with him to find a solution.

If you fill the trip home with fun things, he will EXPECT this every time he is home. He won't bother to learn to entertain himself because he doesn't feel it is necessary.

Don't drive him back again. Arrange transport, even if you have to have an ambulance come to the house. It just is NOT SAFE. You and your easy child could have been killed while difficult child was acting out in the car. And he may have thought he was home for good, so the trip back (even if he was told it was only a vacation) may have surprised him and made him feel you don't love him. Nothing is farther than the truth, I am sure. But htis is how HE may have perceived things, NOT as they truly are.

It may take YEARS in Residential Treatment Center (RTC) before he can come home successfully for any length of time. It was just too soon for his new behaviors to become firmly established enough. He is probably as upset as you are, because he probably figured he was home for good.

You expected him to behave as well as he did when he visited. It was just too much for him.

Did you do ANY of the sensory therapy, the brushing and joint compression? If not, have the staff teach you how and send his therapy brush home when he comes home. This brushing therapy has an amazing ability to calm an upset, frantic or even raging child. At least it did for my difficult child AND my pcs. It would be a great tool to have to help you both survive a visit. If the staff is NOT doing brushing therapy with joint compressions, ask them why not? DEMAND that they provide this therapy.

Why? Brushing therapy REWIRES THE BRAIN. It is one of the ONLY things that has been SHOWN to rewire how the brain works. It teaches the brain how to appropriately use sensory input. This makes the child FAR less overwhelmed by any sensory input. Chances are that home held new sensory things (new from what he had at the Residential Treatment Center (RTC)) and it was more than he could handle. Especially if he didn't have an activity to distract him.

ALSO go and buy a copy of "The Out Of Sync Child Has Fun". It is FILLED with loads of activities to help kids with sensory issues. The Residential Treatment Center (RTC) should have an Occupational Therapist (OT) on staff who has evaluated difficult child and can tell you what his sensory issues are. Take that knowledge and use the book to devise various sensory activities you can do at home. Most of them are low cost or have budget friendly adaptations. Even on our 1 income budget we managed to do a huge number of the activities.

Then use these activities, and the brushing therapy, regularly throughout the day. having difficult child go from a tightly structured day at the Residential Treatment Center (RTC) to a totally unstructured day is a recipe for disaster. He isn't used to needing to entertain himself. Therefore, any structure you can provide will at least help him maintain. maybe write out a schedule and post it near a clock (writing it big on posterboard can be helpful). Then when he is getting bored he can check to see when the next "thing" is. Even put mealtimes, bedtime, bathtime, tv time on there. It will be a big help. Remember, every moment is sceduled at Residential Treatment Center (RTC). So at home, with NO schedule, it is very overwhelming.

He may be incredibly manipulative. Or seem that way. Some of it may be do to needing things that are not provided. It may also be that it is the only way to get whatever he desperately needs and cannot communicate. And as a result of extreme frustration that he just cannot handle. Add in sensory confusion and overwhelmed difficult child may resort to manipulation to get what he NEEDS. Wouldn't you? It is an adaptive skill, one he is pretty good at.

psychiatrists and tdocs who are not trained in Pervasive Developmental Disorder (PDD)-not otherwise specified and other autistic spectrum disorders may very well think his manipulation is off the charts. And it may truly BE off the charts. But there is probably at least part of the manipulation that can be chalked up to trying to get whatever it is he NEEDS and cannot communicate. IF his dad and other relatives do this, it may very well be that they are ALSO Pervasive Developmental Disorder (PDD) or otherwiise on the autistic spectrum but never diagnosed.

I know for a fact that my dad is Asperger's but he has never been diagnosed. Given the level of his adaptation, he wouldn't be diagnosed now. He learned to cope, and did it well. But when we kids were small he worked all the time. Then one Christmas break everything in the city closed because of a blizzard. And my dad got HIVES from all the stimulation and unexpected by him behaviors that we kids had. NOT that we misbehaved, we generally didn't, but we just overwhelmed him. He got sick because he couldn't cope with 2 kids at home. And he was a high school shop class teacher, used to large quantities of the worst and dimmest bulbs in the school!!

That is one illustration of how poorly people on the autistic spectrum can handle situations that are not normally part of their lives. Did my dad get sick with hives because it was a manipulation to get us to leave him alone? No. He had NO control over the hives, it was how his body and mind reacted. It could have been something he faked, but it wasn't. At that time we didn't even know what aspergers was, much less know anything about autism being a spectrum of anything.

You may have to push the school to help you develop ways to handle him at home. And it may be years before he can handle another extended home visit. You CAN refuse to take him for a visit, and at least for a few months you SHOULD. He needs time to recover from the visit and to relearn the skills he needs to cope at home. We refused several visits home when Wiz was in the psychiatric hospital for 4 months. The first month when they suggested it I actually laughed uncontrollably. Just the THOUGHT of taking him home when they hadn't even SEEN the behaviors he inflicted on us at home, well, it was hysterical!! They were not amused. But until he showed them his dangerous behaviors, and admitted to what he had done, he was NOT coming home. Period. I KNEW that within a month of a successful home visit they would release him. And he would still be a danger to us. They were not prepared for an educated parent who spent time learning about the disorders her son presented, nor for a husband who backed up that spouse, so they were flummoxed at first. They tried to threaten us with charges of abandonment if we didn't take him on a home visit. I laughed. We were already at the end of an investigation by child services, and NO WAY would they believe we abandoned him. THEY said to never bring him home. Then they tried the guilt trip "He will think you don't love him." So What? he knows it isn't true. If I find out you told him he couldn't come home because his parents don't love him I will have you in front of every regulatory board that exists, and in court for child abuse.

So he didn't come home until well into his third month in the psychiatric hospital. He knew we loved him. We loved him enough to make SURE he showed them the dangerous behaviors, and to make SURE they helped him get past those behaviors and learned how to cope.

You need to make sure teh Residential Treatment Center (RTC) is teaching your son how to cope. Insist on Occupational Therapy for the sensory issues. If the sensory issues are bad enough that they are listed as a separate diagnosis, tehn they are really severe. So he needs SPECIFIC treatment for them. The brushing therapy is the ONLY therapy I know of that is proven to rewire the brain. It will rewire how his brain handles sensory input. This makes him less likely to get overwhelmed and revert to his non-verbal state.

Then, when he starts to revert, you do the brushing therapy every couple of hours and he has a strong likelihood of pulling out of at least some of the problem behaviors.

The Residential Treatment Center (RTC) also needs to show you how they deal with him so that you can use those techniques at home. It will make it easier for him to handle the visit, and for you to handle the visit.

I am sorry things have been so rough. I hope you stick around awhile! I missed you!

Many hugs,

Susie

 

[BusynMember]

Thanks, Sus. You explained it really way. Kids on the spectrum look manipulative to regular tdocs and psychiatrists because, for the most part, they don't know squat about the spectrum (even if they say they do). And Spectrum kids can look mentally ill, manipulative, etc. when it's really that they are being treated without regard to their many disabilities that make functioning very difficult.

If there is an Residential Treatment Center (RTC) for children on the spectrum, I would go there. You are seeing repetitive regression (a trait of autism) in my opinion because he is getting behavioral therapy for "typical" kids rather than help coping with a serious disability the impacts every faction of his life. Autism Spectrum Disorders (ASD) kids don't do well with change. If he has spent umpteen weeks in Residential Treatment Center (RTC) and gotten used to it then has to come home that's a big change. If he is at Chuckee Cheese then has to go home that is also a change. It can cause a big meltdown unless the kids are taught HOW to transition. The sensory issues should be addressed--agree with Susie. Kids on the spectrum who are ten can not be expected to act ten--period. The disability itself is a developmental delay and the child will be mentally years younger. I also wonder if he isn't brighter than he tested. Regular tests short-changes Pervasive Developmental Disorder (PDD) kids a lot. A school "regular" psychologist tested my son's IQ at 75. He seemed brighter. When a neuropsychologist tested him at age 11, and he was pulling A's and B's in school, his IQ shot up to 107. I think it's even higher than that. Autism Spectrum Disorders (ASD) kids test poorly partly because they sometimes need to understand the test differently, even as they often have unique learning styles. They are different and special. And, if not given Autism Spectrum Disorders (ASD) interventions, their outcome can be a lot worse than it could have been.

I would look for people who are very specific to understanding Pervasive Developmental Disorder (PDD)-not otherwise specified--not the rest of the alphabet soup that he was given (that are all traits of autism). If it were my kid (and I have one like that) I would focus on professionals who will help him live in the real world in spite of his different wiring. You can't change a cat into a dog. You can't make a child on the spectrum think like somebody who is not, nor change him by the usual methods. You CAN help him cope. Right now he sounds just immensely frustrated and I take issue with the pdcos and tdocs who do NOT specialize in Pervasive Developmental Disorder (PDD) who say he is very manipulative. Of course, it is your call, but I feel they are not right with this kid. Hey, my son was misdiagnosed with bipolar. Mental health experts are not that sharp about Aspergrs/Pervasive Developmental Disorder (PDD)-not otherwise specified/autism. Why? Because the behavior of kids on the spectrum is triggered by their disablity, NOT because of mental health issues (although problems can develop if nobody helps teach the child how to cope with Autism Spectrum Disorders (ASD)).
I wish you luck and hope you find an answer that is right for your family and your child.

 

[Hanging-On]

Thanks Suzie, do you know that for years I've been also asking for an Occupational Therapist (OT) to work with him outside of school (that's the only Occupational Therapist (OT) he gets-1 hr a week). You have no idea how frustrated I am with not getting the help he/we need. And No, the Residential Treatment Center (RTC) doesn't have an Occupational Therapist (OT). I'm going to see about getting him into the Residential Treatment Center (RTC) for autistic kids (if I heard that right). I pray that there really is an Residential Treatment Center (RTC) specifically for AS kids. I think that's where he needs to be.

 

[susiestar]

Please PROMISE me that if you find an Residential Treatment Center (RTC) for kids on the autistic spectrum you will PM the name and address of it to me!!!! SOOOO many people come here frustrated with kids on the spectrum who are not getting the help they need - having that info to pass on would mean the WORLD to me!

I am fairly passionate about the autistic spectrum issues, as are MWM and Marg, because I have a child on the spectrum. I see how truly special and gifted so many of them are, and how regular education leaves them behind and unchallenged and frustrated. Mostly because I have LIVED through it and I KNOW there is a bright future ahead if you get the right interventions. Wiz is AMAZING - he is BRILLIANT (Last IQ test put him in the 140's) and he has learned to cope with the world!!

I KNOW how frustrated you are. I learned about brushing therapy when thank you was 5. Wiz was almost 14!! The Occupational Therapist (OT) said that brushing might help him, but not to make an appointment because he was so much older than anyone she or her coworkers had evaluated. So I just took the technique she taught me and used it on all 3 of my kids. They ALL became so much better adapted. I finally broke down and bought a 6 pack of the brushes online because with shipping all 6 were the price the Occupational Therapist (OT) was charging for 1. We went through so many brushes because they got worn down (brushing over clothing is fine, but can be tough on the brushes) or lost. I also gave a couple to friends who couldn't get to the Occupational Therapist (OT) and lost/wore out their brushes. Around here to get a private Occupational Therapist (OT) you have to drive 90 miles to one of the big cities (OKC or Tulsa).

I did the therapy on thank you, and also on Jess and Wiz when they were home from school. It was incredible. It didn't "fix" them but it DID make it easier for them to be in the world. Esp the world outside our home. thank you showed teh most drastic change, in about a year he was able to handle church services even in the front of church where the organ was really loud, able to sit through a program on the cultures of other countries performed at the university here (we have one of the largest foreign student populations of any university in the US, due to our agriculture and veterinary colleges at the University). So many things, he could even go to the grocery after school as long as I had a snack with protein for him. He could even wait until we got to the deli at the store and got popcorn chicken to eat while we shopped!! It seems small, but it was HUGE! He still has Occupational Therapist (OT) at school and it helps quite a bit. I only had 2 days I kept him home from school because he was so overwhelmed. I had about 9 PER QUARTER last year. School totally understood, they even called me last year when he just couldn't function a couple of times. It makes THAT big a difference!!

THe older kids just became more easy going. Wiz got to the point we didn't have to schedule everything to give him advance notice if we were going somewhere. We used to have to let him know a day or two ahead if we had to go run errands or visit my parents or whatever. Which was annoying and often Raise whatever Cain you have to to have the Residential Treatment Center (RTC) get an Occupational Therapist (OT) there or take him to one. Make them do it, however you need to. It is too important to not do it.

Anyway, I am glad we could give you some ideas. I pray you find that Residential Treatment Center (RTC) for spectrum kids and that he can grow and flourish there. Our kids on teh spectrum have so much to offer the world, they just need more involved maps and skills to navigate it!

 

[BusynMember]

Yep. When you have a spectrum kid, it's alarming at how many times the treatment is wrong and they are misunderstood. With the right help, these kids can really go far and the acting out can stop. Also, they just don't respond well to regular IQ testing--many have hidden abilities that mental health professionals don't see. Why? Because autism isn't a mental health issue and that's what these mental health professionals are basing behaviors on. It's very hard to get the right help. You have to YELL!