New here -- pardon my pitiful cry for help

[papashango]

sorry for the wall of text -- how do you make it keep paragraphs?[p]I was up late last night, searching the interwebs for someone, anyone, who's in a similar boat and I came across this site. Rather than start from the start, I'll just post the thoughts I jotted down yesterday. We've been seeing a therapist for 8 months now but she hasn't been able to diagnose yet. We're going in for intensive testing this June and hopefully starting some sort of medication. We've all reached our limits -- it feels like the entire family is imploding. Sorry to vent! ****************************** [/p] Today is a perfect example of what happens around here all day long. Every. Single. Day. The boys are watching a cartoon this morning (wife's out of town -- I needed a minute to make lunches and do the dishes). difficult child (5 years old) is amused by a song they're singing in the show and starts belting it out for 30 seconds or so. #2 thinks it's funny and parrots. difficult child decides that it's rude and disruptive for #2 to be singing and starts screaming at him to be quiet and sit down. After 30 seconds or so of hearing him scream, I intervene and tell him to stop yelling -- follow the golden rule. So then the Obsessive Compulsive Disorder (OCD) kicks in and difficult child starts asking if he can start the movie over because it's ruined. I say no. Then comes the 30 second barrage of repeating himself -- can we start over? Can we start it after school? I need to start it over! #2 ruined it! Can we start over? I get irritated and send him to his room. If I had chosen not to send him to his room, this would have gone on for a few minutes, led to tears, screaming and a complete meltdown. I nipped it in the bud. 5 minutes later I tell him he can come down. I sit down and start explaining the golden rule and why his behavior wasn't fair to #2. He CANNOT pay attention -- he's trying to keep his face pointed in my general direction, but his eyes are darting all over trying to find something.. anything.. more interesting than what I'm saying. It's all in one ear and out the other, just like everything else that anyone says to him. Zero impulse control -- zero ability to focus on anything that's not immediately fun. He doesn't believe he's at fault. He's never at fault -- it's always some convoluted lawyering about how it's #2's fault for singing -- if #2 wants difficult child to be considerate, #2 has to follow the golden rule first and not sing after difficult child has already done it. The golden rule, and really any blame for anything, always starts with the other person. The other person always has to be the bigger man. Every time. The kid is 5 years old and, in his opinion, has never been wrong about anything. And he seems genuinely confused that I'm getting on his case because I must just be being mean for no good reason at all. Is that ODD? So I get annoyed that he's not listening to a word (I'm keeping it short -- it's not like I'm droning on. He just doesn't care) and send him back to his room. 5 minutes later I let him out -- he's written a note to Mommy (who's out of town and thus the nice parent du jour) explaining that I'm mean. He cannot control his impulses in the slightest. Then his Obsessive Compulsive Disorder (OCD) kicks in and makes it 100 times worse. Then when you try to correct him, regardless of how gently, you're just being mean and he's not to blame for anything. It's always the other person who started it even though 95% of the time, difficult child has caused the problem in the first place. And now it's up to me to calm things down before school and be the bigger man once again. Yeah that's part of parenting, but does it have to happen 600 times a day? 7 days a week? And if by some miracle he does listen to what you're saying and accept responsibility (or maybe he's just faking it so I'll shut up), he's forgotten the lesson in 90 seconds and he's right back to tormenting the rest of us. This is some completely unworkable bull****. And this is my life.

 

[keista]

Welcome! Sounds like a handful.

ODD? Yeah, BUT we (sorry, meant to say some of us) don't like that diagnosis around here. It's pretty much meaningless. It offers no explanation as to WHY the child is being oppositional and therefore there's no clear treatment. So you get some fancy letters, but you're no better off than when you started.

Great that you'll be getting thorough evaluations soon. You've got a pretty good self-assessment going. May I suggest researching Pervasive Developmental Disorder (PDD)-not otherwise specified and high functioning autism including Asperger's. From your brief description, I feel he may fit in there.

 

[TerryJ2]

Hi Papashango, welcome.
Sorry for the chaos. I know how you feel. He sounds like my son, to a point.
I'm going to throw out an idea--Asperger's. Not just because he sounds like my son, but because of the perseverance, the repetition, and the need to start over from scratch.
I hope that your therapist(s) are open to that idea.
You can be ODD for no good reason, in my humble opinion.
I'd try a stimulant medication, even if you're against medications--it will help him focus and not have his eyes dart all over, looking for stimulant.
You have a lot of work ahead of you, but sitting down and explaining like you did is not all bad. Repetition and consistency on your part is very good. Controlling your temper is good, too. Easier said than done, though!

 

[STRESSEDTOMAX]

My life too. My difficult child has been diagnosis with Pervasive Developmental Disorder (PDD)/Aspergers...not quite sure. But right now, we're dealing with a lot of the ODD stuff and that's the stuff I find so hard to live with. Our family is imploding also. It stinks....it really does.

 

[buddy]

Well, of course we can't diagnosis anything as parents but we often do see it before the docs do because we LIVE it and put me on the Autism Spectrum Disorders (ASD) (austism spectrum disorder) wagon too. I thought it the second you said he couldn't handle the bro singing too...then he had to start it over, he can't really probably process all of the rules that deal with how other people feel and how his behavior impacts other people. The world really may be more about him at this point and it is not because he is rude or just trying to be oppositional and defiant to you.... it is because he likely does not perceive things the same way you do.

His reactions in this whole story sound like a child with high functioning Autism (Asperger's or Pervasive Developmental Disorder (PDD)-not otherwise specified which is a child who is sort of on the spectrum but may not meet full diagnostic criteria, or even Autism but just really high functioning).

How does he play otherwise? Does he have friends? Does he use toys in a really imaginative way (makes up new names, new scenarios...not the imitative kind of play), does he have any special interests or hobbies or things he focuses on more than other things ..kind of a mini-expert on things??

How was his early development? Language, motor, health?

Just some thoughts.... There of course are other reasons these things can be happening but many of us have Autism Spectrum Disorders (ASD) radar (I do after working in the field for 25+ years and having a child with that diagnosis) so that I am sure is why we can see the possibility here. Naturally this is the internet and we are not actually seeing the big picture, but you did a great job of explaining a typical Autism Spectrum Disorders (ASD) situation!

 

[busywend]

I like the ODD diagnosis - I don't know when 'we' started to not like it.

It is a good description of the behavior my daughter portrayed at a younger age. And I grasped onto it like a life line, and it brought me here.....soooo ODD is absolutely real and valuable to me.

I am not sure if your son has been actually diagnosed yet. But I sure see the Obsessive Compulsive Disorder (OCD) there. He literally can not watch the rest of the movie you know. It HAS been ruined. To him starting it over and ensuring little bro does not sing this time is not unreasonable. It would make him happy afterall. So, why wouldn't daddy want him to be happy? I am being his mind right now, I hope you see that. This is how he thinks. It really is NOT unreasonable thinking to him. I mean, it would take you 4 seconds to start it over and tell little bro 'dont sing this time'. Right? At least that is what your older son is thinking.
As far as not paying attention when you are talking to him after this scenario.....there is no way he can understand your side of this as he sees you as unreasonable now. I mean 4 seconds dad! Gosh! That is all he can think about.

Start thinking about this from his perspective and life will get easier for you all.

 

[buddy]

I hear you busywend, I actually try not to say I dont like it, for me, it is just not very useful in the end....but I can see it as a perfect descriptor of what is going on and as many have said, it sure can get you into services if you have not found what is underneath...and honestly, I met a lady the other day where they simply can't find a reason for her son...he has had like 20 psychiatric hospital and some Residential Treatment Center (RTC) stays and he is 15, the have no clue, but that diagnosis helps to get him treatment. She'd sure like to know WHY the ODD though. For me, in our case, ODD is like saying he perseverates, is clumsy, is loud, and many of the other symptoms he has. Just part of the bigger picture. But it does seem there are kids who just dont fit many of those bigger umbrella diagnosis and in that case I can imagine ODD is a lifeline diagnosis, at least someone is listening. (and I have also said, the attitude I have seen in schools is often that ODD is more of a choice in a child, or a result of poor parenting, not necessarily by the specialists in the field but by gen ed teachers and administrators, and that really stinks, it is not right and not fair)

I have said many times I should have just given my kid the middle name Oppositional. He knows the word because I started using it with him years before I was on this site, LOL. Usually in an exasperated, kidding way thinking when he was little it was too big a word for him to feel anything negative about it. Now we use it for real and I ask him why he is being oppositional right now, he will say he just feels mad etc... oh well.

 

[busywend]

I started using parenting resistant......it actually opened some eyes to what I was dealing with.

 

[buddy]

I started using parenting resistant......it actually opened some eyes to what I was dealing with.

I LOVE that perspective! Wish that was in the DSM!!!!

 

[keista]

Sorry busywend. I "mistyped" I try not to say "we", but sometimes forget or am a bit quick and therefore careless, because I'm very aware that "we" don't all always agree on everything. Beautiful thing about this site that there are so many different perspectives.

 

[papashango]

How does he play otherwise? Does he have friends? Does he use toys in a really imaginative way (makes up new names, new scenarios...not the imitative kind of play), does he have any special interests or hobbies or things he focuses on more than other things ..kind of a mini-expert on things?? How was his early development? Language, motor, health?

He plays very... poorly. He's very bossy with other kids (i'm not sure words can adequately describe exactly how monumentally bossy he is), he has an uncontrollable NEED to take toys that he sees other people playing with, particularly his little brother. No real friends -- a few acquaintences due to a lot of work on my part to find playdates for him, but none of them have ever gone swimmingly. He prefers interacting with adults, older kids, or very young kids. But not his peers. He doesn't seem to have developed many interests yet -- creative play usually consists of asking me to think up something for him to do, and then shooting down the suggestions. If you corner him and force him to do something, he'll draw, color, cut stuff out, and he likes to read. Developmentally, he was a language genius -- he's the kid talking in complete sentences at 18 months, understanding grown-up concepts at a very early age. But socially, he's always been off. He doesn't really pick up on social cues, or possibly he just doesn't care. For example at playgrounds and at the bus stop he likes to play "chase" with younger kids, who of course absolutely hate having a bigger kid chasing them around. So I'm constantly forced to coach him when he's out. Thanks for the ideas, everyone -- part of my coming here is a hope to get some clarification on what's happening while i wait for the specialist appointments.

 

[keista]

He plays very... poorly. He's very bossy with other kids (i'm not sure words can adequately describe exactly how monumentally bossy he is), he has an uncontrollable NEED to take toys that he sees other people playing with, particularly his little brother. No real friends -- a few acquaintences due to a lot of work on my part to find playdates for him, but none of them have ever gone swimmingly. He prefers interacting with adults, older kids, or very young kids. But not his peers. He doesn't seem to have developed many interests yet -- creative play usually consists of asking me to think up something for him to do, and then shooting down the suggestions. If you corner him and force him to do something, he'll draw, color, cut stuff out, and he likes to read. Developmentally, he was a language genius -- he's the kid talking in complete sentences at 18 months, understanding grown-up concepts at a very early age. But socially, he's always been off. He doesn't really pick up on social cues, or possibly he just doesn't care. For example at playgrounds and at the bus stop he likes to play "chase" with younger kids, who of course absolutely hate having a bigger kid chasing them around. So I'm constantly forced to coach him when he's out. Thanks for the ideas, everyone -- part of my coming here is a hope to get some clarification on what's happening while i wait for the specialist appointments.

WOW! Almost a text-book description of Asperger's. Please read up on it. (again, not diagnosing here just pointing you in possible direction based on experience)

 

[AnnieO]

Hi there & welcome!

In many ways you could be describing my 13-y/o. Smart as a whip but has problems interacting with peers, bossy, etc.

I still think my son is an Aspergers kid, but so far we haven't gotten that diagnosis. I'm glad you have appointments coming up - they may save your sanity (along with this place... This board has kept me from going off the deep end MANY times).

I don't have anything to add to what others have said, but... So far you're doing great!

 

[papashango]

Thanks. One thing I'm seeing when I read on it is that a lot of asperger's kids are physically clumsy -- my difficult child is actually very graceful though. Very coordinated, rarely falls, actually did ballet for awhile before he lost interest and it became more of a struggle than it's worth. Does that make it any less likely that we might look at aspergers or are there many varieties?

 

[TerryJ2]

he can't really probably process all of the rules that deal with how other people feel and how his behavior impacts other people

Absolutely. Great way to put it.

creative play usually consists of asking me to think up something for him to do, and then shooting down the suggestions.

Oooh, when did my son move in with you?

 

[susiestar]

Hi and Welcome - you truly have found a group of people who 'get' what you are living through and will NOT just assume it is bc you are parenting him wrong somehow.

I honestly and truly feel you are dealing iwth some type of Asperger's or Pervasive Developmental Disorder (PDD)-not otherwise specified. The good thing about this is that it is a HOPEFUL diagnosis. There are a LOT of things that can be done to help him. My son was diagnosis'd with Asperger's at age 7. At age 14 my son had to leave our house and go live with my parents because he was beating me in an attempt to get through me to beat/kill my daughter. He had already spent time in phosps due to the extreme violence he treated my daughter and I with. not my husband, not even much my younger son, most of the violence was aimed at females.

So given that, WHY do I say it is hopeful??? My difficult child is now 20 and is a college sophomore with straight A's, has had a job for 4 yrs, is a really sweet kid, and shows every sign of having a great future and is a wonderful young man who is not violent at all! It took a LONG time and a LOT of hard work from ALL of us, but there are a LOT of positive things in an Asperger's or autistic spectrum diagnosis.

I really want to encourage you to try to look at your attitude toward your difficult child. NOT that he isn't annoying, difficult, frustrating, and hard to live with. But he is NOT choosing to do this stuff or doing it for the heck of it. Kids do well when they are able, not when they want to. It may seem like semantics, but I really don't think your son has any clue what you are talking about hwen you say that HE has to do these things (golden rule, etc..) first or also. If he has Asperger's or an autistic spectrum disorder, then he honestly does NOT understand the social rules and he will NEVER pick them up without direct teaching and more repetition than you will thing anyone can stand. He just CANNOT learn them unless they are specifically spelled out over and over.

I am willing to be he has HUGE sensory issues. Do you think he maybe has perfect pitch, or at least hears in perfect pitch? Sensory issues happen when the brain does not handle sensory input the way a typical brain does. Someone with sensory issues will either seek out or avoid various types of sensory input. The wrong sensations will seem like insurmountable obstacles to him and he will FREAK over them. He will seek some sensations, either types of motion, smells, sounds, textures, tastes, etc..... It may seem like he is making mountains out of molehills to you. I can PROMISE that they are honest-to-goodness mountains to him. I have lots of sensory problems and they truly impair me. If my clothing itches I just don't function on ANY level. I cannot think, cannot hold a conversation, totally melt down, and NOTHING can get my brain to function until the itching stops. I would rather be punched in the face than have to wear anything that itched.

I think sounds are a sensory issue for your son. If, as I suspect, he at least hears in perfect pitch, then hearing someone sing off key or out of tune is actually PAINFUL to him. Wiz ended up in HUGE trouble at school in first grade because he REFUSED to sing when they had music class. He often left the room to go cry in the boy's room or to find me at school and BEG not to go to class. He has a wonderful voice, but being in a room with people who sang off key or out of tune actually HURT him. He would come home with a migraine and be vomiting for 2 or more days if I allowed the teacher to insist he stay in music class. Even in first grade it was that bad.

So how to get help for your son?

Your son needs complete evaluation and the therapist you are seeing is a great place to start. The local school system is also mandaated to identify kids with problems and they can do some testing for you. I will warn you that often the school evaluations are not as accurate, complete or sensitive as private evaluations, regardless of the type of evaluation. Some evaluations are as good at school, but it is widely variable. In addition to the evaluation for Asperger's/Pervasive Developmental Disorder (PDD)-not otherwise specified, and other things, your son also needs an Occupational Therapist (OT) evaluation for sensory and motor issues. Occupational Therapist (OT) is occupational therapy and the Occupational Therapist will evaluate him for sensory integration disorder and various coordination disorders. Thent he Occupational Therapist (OT) will help set up the therapy that iwll help these things. Sensory Integration Disorder (SID) (sensory integration disorder) has some AMAZING therapies. Brushing therapy is a non-medication based therapy for Sensory Integration Disorder (SID) that is PROVEN to actually create new pathways for the brain to handle sensory input. Think about htat. A way to change how the brain works that does NOT involve medications - isn't that AWESOME???!!!!??!!! A surgical scrub brush (very soft) is used on the body, on skin or over clothing, in a certain order, and combined iwth gentle joint compressions and it changes those sensory issues - the things like my itching that I just cannot cope with! You have to be taught to do it by and Occupational Therapist (OT) or you can cause serious medical problems, but it is simple therapy and one round of the brushing therapy takes under 5 min and most kids LIKE it. Not all, of course, but the ones I have seen all like it.

There are some books that will truly help you and your son. the first, one we recommend to everyone, is The Explosive Child by Ross Greene. It is wonderful. the parenting methods in it may seem totally counter-intuitive, but it WORKS. I also recommend anything by Tony Attwood - he is the best on Aspergers. What Your Explosive Child is Trying to Tell You by Doug Riley is a must read because you cannot stop the explosions unless you know WHY they happen. The Out of Sync Child and The Out of Sync Child has Fun by Kranowitz are about sensory integration disorder. The first one explains the problem and how to help including providing the sensory diet that will help your child. The second book, the Has Fun one, is packed iwth FUN activities that provide the sensory input that your child needs. It has ways to make each activity less expensive, and it truly is FUN. I am now on my third copy of this book because we have worn out the first 2 copies. I have even given this as a birthday present to moms that I know because I have yet to find anyone, adult or child, who did not truly enjoy the activities. How awesome it is to have a book full of FUN that is also therapeutic and helps your chld learn to cope??? By fun I mean fun for the whole family or even for an entire class of kids!!!

My signature has a link in it. That link will take you to the most powerful tool a Warrior Parent can have other than our love for our kids. this tool is a Parent Report - a report that YOU creat about your child. Moms here before me created this outline that keeps ALL the info about your child in one place, in a binder that you can take to EVERY appointment and/or meeting for/about your chld to keep it all organized and at hand. You cannot get the help your child needs unless you keep organized and can clearly communicate iwth the docs/therapists/teachers/etc... Click the link, read the thread about the Parent Report, and then as you are ready, create one about your child. I even have them for my PCs, my husband and myself. I take them to dr appts and teacher conferences and all that type of thing. That way I have records of what we have done and how it worked out.

I hope that you stick around. We have a lot of info, and we are happy to share it with you! Welcome to teh Board!

 

[papashango]

I'd just like to say that for the first time in almost 6 years of parenting, I feel like I've received some practical and relevant advice from you folks. Thanks. Part of the frustration with this stuff is that it's hard to come up with solutions when you don't have any clue what the problems are -- action steps like these are just what I needed to hear.

 

[InsaneCdn]

Thanks. One thing I'm seeing when I read on it is that a lot of asperger's kids are physically clumsy -- my difficult child is actually very graceful though. Very coordinated, rarely falls, actually did ballet for awhile before he lost interest and it became more of a struggle than it's worth. Does that make it any less likely that we might look at aspergers or are there many varieties?

Autism Spectrum Disorders (ASD) is a spectrum... some kids have many or most "smptoms", but... lack of some symptoms doesn't invalidate a diagnosis. Also, be aware that fine motor issues may not show up until school puts those skills under load.

And... kids can have the motor skills issues and NOT be on the Autism Spectrum Disorders (ASD) spectrum

 

[buddy]

When you see a list of symptoms it can be confusing because all possibilities are listed. For a diagnosis they only have to have a certain number of the possible symptoms in each category. So some kids on the spectrum do have imaginative play. Some are coordinated, some are gifted and some are challenged. That's why its a spectrum disorder .....trust your gut....