Any support greatly appreciated.....

[PassedExhausted]

Hi!

I'm a new member. I stumbled upon this site while once again rechecking to see if I'm crazy. My son is 12 and he's been extremely difficult since he was a toddler. He's had Occupational Therapist (OT), ST, Resource help...he's always been about 2 years behind his peers. When he was three, his preschool teacher (who was also my daughter's preschool teacher) sat me down and told me that we had some issues. She called in an outside agency that tests children and they felt he may have Sensory Integration Disorder (SID). That was a group of five people in on the testing and they spent over an hour and a half with my son. The follow-up person who came out to "concrete" that finding, spent exactly 25 minutes with my son and insisted that there was nothing wrong with him. At that time, I didn't wan't him labeled....and even though I knew something was "off" I accepted all the therapy the district was willing to give....and let it go. It's never really gotten better. My son crumbles in rages....he's had them since he was two...they last for hours....I've literally spent entire evenings (6 hours sometimes) having to restrain my son. He hurts people....a lot and viciously. He attacked three people at school...his principal twice and two staff people once. When the Principal told me that she was going to call the police if he didn't calm down....I yanked him out of school to homeschool....this didn't go well. He had his first bout of severe depression about a year ago....where he matter-of-factly spoke about thoughts of suicide, he's tried to throw himself out of moving vehicles. He attacks everyone in the house. The first psychologist I brought him to thought it could be bipolar, since he was already diagnosis'd as ADHD...and a tentative ODD...she felt that bipolar was the umbrella. At the time all of this behavior was happening at home. She assured me that it was usually the case with bipolar kids to have one place where they feel free to let loose, while maintaining at other places. I researched this and found it to be true. I did stop seeing this psychologist because I thought she centered too much on how I can change myself to help my son. Now, don't get me wrong, I get the changing your approach thing and the picking your battles thing...but I went through months of reward charts and rewards, journals.....none of which my GFC cared about for very long (classic ADHD). We didn't seek help again until he was depressed last year...this psychologist also felt strongly that we were dealing with Borderline (BPD). He recommened getting my son back into school but at a controlled environment where there were counselors and support staff and nurses...as well as psychologists and psychiatrists on site to take over his medications. I fought to get him into this program.....and he shows nothing there....the normal....back talk and disrespect, some depression...but nothing like the kids around him (full blown crises a few times weekly). This is an 8:1:1 environment with support staff and counselors constantly coming in and out of the room. Things have not been happy, happy since he started school again. I've needed to have the police out for my son three full times. He has turned ME in for abuse....for an incident while he was restrained (or trying to be) and pulling my hair out with one of his hands...he's needed to be transported to the psychiatric center and it took two big officers to get him there. He is twelve and needs constant supervision...he can't go to the playground with his friends or down the road to the store....because he invites trouble. The smallest slight....gets him riled enough to want to kill someone. The only place that he can maintain is at school. And now the psychiatrist tells me that he can't understand why my son's behavior is not manifesting itself at school as it is at home...and it must be my family dynamic. I didn't speak long enough that he had to inquire whether or not I was still on the line. I was infuriated that once again my son's problem....somehow means that it must be something I or someone in my family are doing. I resent the implication that I need therapy or my family needs to go to therapy because of my son's illness. And if this is what this pyschiatrist does on a daily basis (as he is the program's psychiatrist) why doesn't he KNOW that bipolar kids typically hold it together in one place while letting loose in a grand way in another. Why is he making me feel that the above is a false statement. I did pull myself together to point out that it was actually ONLY at school that he seems not be acting out, since he can't be out of my sight for literally 10 minutes without either trying to harm someone or pushing someone else into wanting to harm him. I asked him whether it was really that strange that he's only been at this school for 6 months and there are literally between 3 and 5 people around constantly to supervise what's going on in a group of only 8-14 kids. He then told me...."Well if he truly only behaves when the authorities are standing over him....". At that point I stopped him and reminded him that he didn't care when the actual authorities were at my house....calling them filthy, vile names, and being disrespectful...then need to be dragged by two to the psychiatric center. He actually chuckled and said, "yes I heard about that and we may be looking at ODD." ARRRRRGGGHHHH!!!!! I'm truly at the end of my rope. I don't even know if I want to fight to keep him in my home. I feel like I'm crazy. For the longest time I never let anyone know about the abuse we all suffered at the hands of my son....but if you follow through and call the authorities (it took me 8 full years to do that)....they penalize you...by all the time and inconvenience that you need to go through because you have a mentally ill child. I do know that our whole life centers around my difficult child's moods and rages. Trying Geodon now....yeah the dr's answer to my dilemma from above was to increase that by 20mg....like that was what I looking for. I feel like I got a "shut up" increase.
Thanks for being my captive audience.
MK

 

[everywoman]

Hey there. Things are quiet around here this afternoon, but I wanted to let you know you are not alone. Many of us have been there done that---my difficult child is now 22---and although things are better, they are far from normal. I wish I could tell you the answers---but I have found in the last 20 years that it is all trial and error. Each of us have different approaches. I will ask if you son has had a nueropshych evaluation----that may give you a more definitive diagnosis----but I'm not sure that diagnosis matters if you can get the behaviors under control.

 

[shellyd67]

Hi, I am new to this site as well and I am hoping for support, understanding and feedback from all families who are in our similar situation. I read your post and I feel for you and your son. I am in the process of finding a pyschologist who specialized in ADHD/ODD who can help my son. From all the research I have done this seems to only help a difficult and trying situation. My son did see a behavioral therapist for over a year and things seemed to but somewhat better but quite frankly she wasn't the right fit for him. He hated going and the idea of him having to go again is not going to be pleasant. Right nowwe are trying to find the right medication (NO LUCK SO FAR) after trying to fight the battle without medications for several years. He is almost 10 and we have suspected since he was around 7 that he had ADHD. It took a very long time for my husband to come to terms with it and accept it and then we were able to move forward and get him the help he needed. He has had a bad month or so at home and school due to the fact that we cannot find the right medication for him. He has tried Strattera 25mg, Intuniv 1mg and 2mg and Concerta 18mg and 27mg ... The stimulant medications seem to escalate his impulsive behaviors as well as leaving in need of complete direction at school. He is failing tests, not participating in group activities, unable to stay seated etc. His ODD behaviors stay at home for the moment. What a tough situation we are all in and the worries and fears I have for my sons future are enormous. I would love to listen, support and give advice (if I am able) to anyone who wishes to post. Thanx for listening to my story.


Mom 42 Stressed to the max
Dad 42 great man, hardworker, loyal, patient and very kind
son 9 ADHD ODD loving, sweet and charming, also very defiant,disruptive, unfocused, clueless kiddo
daughter 7 sweet, affectionate,loving, considerate, great student, great kid

 

[Alttlgabby]

Sounds like you have a lot of issues going on there. While I know you don't want to hear this...but family therapy is a great thing.. and sometimes as parents we do have to change our approach to fit these kids "needs". We have to pick and choose our battles. I haven't been on the board in awhile..as is usual for me, but ladies.. things are 98% BETTER in our household than it was a month ago. I have been there. However, the difference for me, is that my family has been in counseling since before we adopted our two girls. It wasn't just helpful for our kids, but it was helpful for ME especially. Therapy is the one place I can go that *I* feel safe and can cry and spew whateve is on my mind! We adopted my two nieces who had their own special issues. The younger one had anger issues which she got over within the first 6 months. The older one.. well, let's just say she has made our house a living hell at times and it only got worse in the last 6 months. She was stealing, lying, and picking excessively EVERY day. It got to the point that I took EVERYTHING away from her! She was going to have to earn it all back with respect. No stealing, no lying, and to at least TRY to go without picking for a day or so (I understood this to be a major issue with her and anxiety, but she was on medications!). We ended up taking her bed down and putting her in the dining room so that I could watch her every minute! I was not even allowing her to go to the bathroom on her own because she would steal something out of the bathroom or pick the mess out of her face! I took her to therapy about 3 weeks ago and we were dealing with the issue of me leaving for a day to spend time alone, which I had done. I told my husband he is going to have to follow her around and watch her every single second of the day! Well, apparently, that did not happen the way it was supposed to because he had to take her into his office while he was checking on something. Left her alone for a minute and she stole nail clippers off someone's desk. On Monday, I saw her with her knee up in the chair and asked her what she was doing. Standard answer of Nothing.. and I was like, what do you have in your hand? My pencil.. umm..your pencil is right in front of you on the table..so what do you have? I opened her hand and she had taken tweezers out of the bathroom cabinet, but of course, lied to me 10 times first before admitting that was where she had gotten them. Asked her about the nail clippers that I had found. Oh, she found those on the floor at my husbands office. Okay, well, why didn't you tell him you found them on the floor so he could get them back to the rightful owner? Don't know! Discover a few days later after trying to find the rightful owner that they were indeed on his desk and not on the floor when he left on Friday.. and the guys in the office were the one's that clean the office..so there is no way they were on the floor... and his desk is outside of my husband's office.. and clear across the room. Anyway, fast forward to Thursday afternoon during therapy. Therapist looks down and sees something on daughters leg and asked her what was on her leg.. and I felt sick because I thought oh man.. Sure enough..we made her lift her pants.. actually sent my son out of the room and made her pull her pants down!!! She had about eight spots on the inside of her left leg that she had been picking and one looked infected. She would not admit that she had picked them....but that she had hurt herself, but didn't remember how. Asked her why she didn't ask for a bandaid and she said it wasn't bleeding that much.. so that right there told us she was lying and knew exactly when and how she had done this. I took her directly to Monte Vista Behavioral health and they took her. She said voices were telling her to lie and steal. She spent 11 days in there and is now sitting at Partial to continue with the intensive therapy she really needs. That ends on the 23rd and she will return to regular school. While in, they changed her medications up. Since being home, I told her we are on a new slate. She is back in with the other two girls and has all her stuff back. I have peace of mind back and am not following her all around like I was. I still check on her but not as much as I had usually done in the past. But, we have not have any instances of stealing or lying, and NO picking since she has been home the last two weeks. It is awesome! Of course, we still have a neuro psychiatric coming up on May 5th, and we go to San Diego on May 7th for Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE), behavioral, and genetics testing.
I do not understand WHY people do not understand that mental illness with these kids is a "popular" thing! There are so many of them that have it and they don't want to believe that the parents are telling the truth when they say that Johnny or Susie hits me or cusses at me, or that I can't control them. They say they are going to commit suicide or hurt themselves. Oh no.. they are these little "angels" at school who have the wool over the teachers eyes. Of COURSE they act this way with the parents!!!! We are the one's they feel comfortable enough with to act that way.. they know we will love them no matter how they act or what they do. When a parent says something such as this they should just allow us to place them where they need to be! They need to be watched. They need serious therapies to learn to cope! To learn to communicate!
Ugh...
Okay.. done for now!

 

[awhitman]

i know exactly what you mean by the system penalizes you when you call the authorities.

my son got in trouble with the law and the first thing they did after we had to go to court twice -was make me pay for anger management classes -which were a joke . the only thing that did was cost me several hundred dollars that i definately did not have.

then he got in trouble again and was ordered to go to school every day and never miss a day. which he never did anyways but now he was ordered to go, so if he didnt go it was my fault and i went to jail. also he was ordered not to be tardy, if he was tardy it would be my fault and i could go to jail.

after more court appearances which i had to work my schedule around he was ordered to not have any contact with girls of any age or boys over 18 years old and guess what? if it was found that this order was not kept-even if he did it without my permission while i was asleep it was my fault and i was held accountable and would be charged and could go to jail.

and lets not forget about taking him to community service and making sure all the papers were filled out because if the paper is lost they refuse to give you another one so you cant let the kid have it because its your responsibility to make sure he is doing community service and you have to prove that you made an effort to take him to the community service or guess what? you get in trouble. you could go to jail.

and the last and most wonderful part of all. you have to also work your schedule around getting him to see a probation officer whom you have to pay every week to have the joy of seeing. and really the meeting is all about you. how is daniel doing? he was abusive to you? oh you have to report that to the police because that means he is not following the judge's orders, you didnt report that? oh thats bad because now YOU are in violation of the court and now YOU are in trouble.

I had to get my son an educational assesment and a psychological evaluation lined up or guess what? i would go to jail. i had plenty of juvenille authorities that were on my back like a monkey trying to convince the judge that i was not a good mother

because when your child gets in trouble/they get an attorney, they get a guardian ad litum they have dept of childrens services workers, they have probation officers. all these people are assembled FOR YOUR CHILD. not for you. you are the easiest one to point a finger at.

you ask for help, they ask for your money, your time, and they attempt to take all you have and then blame you, charge you, take your kid and leave you exhausted , frustrated, angry and bewildered. and if you have more that one child they will attempt to take all your children.

thats my experience with the messed up legal system.SUCKS!!!!!!!!!!!!! But seriously, im sorry about your son. i thought my son was bad but it sounds like your son is really a handful. i dont know how you do it. you are truely a warrior!

 

[Marguerite]

Please forgive me, it's been a rough night and I can't read threads with long, uninterrupted paragraphs at the moment. So part of this could be a stab i te dark. so I'll recap what I understand -

1) He's had a lot of rages since he was two. When raging, he has no 'stops' on his ability to do harm, to himself or to others.

2) He possible has ADHD as well as Sensory Integration Disorder (SID) issues.

3) ODD has been suggested.

4) Mainstream school isn't working well; neither is home-schooling.

5) When he's raging, you try to physically hold him, to stop him hurting himself and others. This takes a long time and is of dubious success in this case (because it doesn't seem to calm him down quickly, as this should do).

OK, again I'm rushing and also tired. So here goes my quick points.

1) I think you need to get him professionally evaluated by a neuropsychologist. Forgive me if you've already been down this route with no success. The conditions to have on the table - bipolar possible, but definitely Pervasive Developmental Disorder (PDD) in some form (Asperger's?).

2) Go to www.childbrain.com and do the online Pervasive Developmental Disorder (PDD) questionnaire. You can't use this to diagnose officially, but it can be a useful tool to help you realise what is 'normal' and what is not. It is also valuable to print the result (regardless of the score) and take it to the doctor to show them the sorts of things that are a concern. Because frankly, these issues are too numerous to hold in your head. You HAVE to take notes, keep a diary and turn up with reams of paperwork. Even your own summary of events for the past month, will be valuable for a diagnostician.

3) Read "The Explosive Child" by Ross Greene. Regardless of diagnosis, this book helps you cope at the coal face. It also helps you cope in a way that greatly reduces your workload and stress level. I'm sure it saved my sanity.

Sorry I have to be so abrupt (I can hear board members cheering at my unaccustomed brevity!) but I felt it was the best way to help in the shortest time.

Welcome to the site. Sorry you need us, but glad we can help.

Marg

 

[BusynMember]

Marg, it won't surprise you that the misc. diagnosis. of Sensory Integration Disorder (SID), ADHD, ODD and his social inappropriateness made me think of Pervasive Developmental Disorder (PDD)/Aspergers too

I think you should get a neuropsychologist evaluation. I think his brain is probably differently wired and that may be one reason why he isn't getting better, even with all the help.

LOL back to Marg again: Unexpected brevity! You're a riot!

 

[PassedExhausted]

Hi Marg,

I appreciate your post and I apologize for my lack of formatting in my post.....usually I notice these things....but it must've been a reflection of my rambling thoughts (I also didn't mean for the post to be that long).

As for Pervasive Developmental Disorder (PDD)....that's what I thought when I first took him to a psychologist (5 years after original evaluation). His first cousin has been diagnosis'd with Pervasive Developmental Disorder (PDD) not otherwise specified. However, that psychologist told me my GFC didn't meet all the criteria and she doubts that is the problem. Second psychologist (last year) said the same after speaking with me for only 20 minutes. I always wonder if things would've been different had I allowed a full work up back when he was 3.....and not 5 years after he'd been in intensive Occupational Therapist (OT), ST, and academic help.

The biggest reason the psychs fall back on, is that my son's behaviors do NOT manifest themselves EVERYWHERE and therefore they don't truly get in the way of his everyday life.

Yesterday his ICM and psychiatrist mentioned actually thinking about Residential Treatment Center (RTC) (hence the reasoning behind the statement I made about not even knowing if I want to fight to keep him in my home). I don't know....on bad days....I just want it to stop...but on good days.....so different.

I've never heard of this neuro-psychiatric evaluation....how much is it, as I'm sure insurance won't cover it.....

Thanks,
MK

 

[busywend]

It can be covered if the pediatrician provides a referral for it.
I would look at Children's Hospitals in your area for this evaluation. It is a team of docs that should spend several hours with your son to evaluate him.

Let me tell you why kids only let loose at home - usually. They know they have unconditional love there. They know that no matter what they do their family will still love them. They are not so sure about what will happen when they act out at school. So, there is a family dynamic at play - but it is not something you can change - it is being a family. Period. You can't not do that. You can't not be a family.

In my experience this does not last forever. In fact, your son HAS acted out at school so why people keep saying it is only at home is beyond me.
But, my difficult child only acted out in front of me (did not have to be at home) until the 2nd half of 6th grade. That was when for some reason she started really putting it on at school.

 

[Marguerite]

We had Pervasive Developmental Disorder (PDD) ruled out when difficult child 1 was 6 years old. That turned out to be wrong - he was finally diagnosed Aspie when he was 14. That was confirmed independently a year later.

We learned to always keep an open mind, and if something is ruled out, don't assume it's gone forever from the radar screen.

Marg

 

[crazymama30]

Just wanted to pop in and say welcome. You have gotten some very good advice. I don't understand why they say he has not acted out in school, maybe not at this school yet but what about one that threatened to call the police?

Hugs

 

[confuzzled]

its not a huge secret of how i feel about all of these "overlapping" symptomologies and how its a carpshoot as to which diagnosis the professional of the hour feels like assigning them to....

but like marg, we have ruled in, ruled out, ruled in, ruled out spectrum issues for the last 11 years. as a matter of fact, our current team of professionals are very split over it at the moment.
mine also doesnt meet the criteria completely, so those that choose to follow the DSM rule it out. those that are in the camp that the DSM is flat out wrong feel its an appropriate label. (couldnt make it up if i tried).

so.
(this is not meant as advice, so please do what YOUR gut tells you to do!!!)

my gut is who gives a rats patoot about the actual "label". the only thing (for us, many will disagree!) we are interested in at this point is identifying the symptoms, ferretting out any reasons behind the symptoms, and treating the symptoms appropriately. period. some symptoms need modifications/accomodations, some need theraputic intervention, some flat out need medications. the only real reason i'd be a proponent of a "label" is if it get you some kind of specialized help or services that you couldnt other wise obtain. LOTS of people disagree with my philosophy, but its my perspective.

neuropsychologist testing may help you pinpoint underlying causes that are impacting your child. it can be a good informational tool and then you can use that information to further help your child.

therapy can also be a great tool, for all of you. a good therapist can work with you to develop strategies to deal with your child. (notice i said good!) it might take a bit to find the right fit for your family, but try to keep an open mind about it. sometimes help comes in some strange forms.

i'm sorry for you--how overwhelmed you feel comes through loud and clear. its disgraceful that the current psychiatrist is putting the onus back on the "family dynamic"...and it happens way too often.

behaviors usually serve some function...if your difficult child is melting down at home it could be anything from feeling safe enough to do it after holding it together all day, or a direct result of some frustration (probably one that even HE doesnt know), or some other unidentified reason. if you havent already, i'd highly reccomend you journal specifically whats happening to look for ANY pattern. it can be simple....since i'm, umm, lazy and forgetful? lol, i use my daily calender....i might jot down a word or too--nothing elaborate, but its probably be the single most helpful thing i've done. for example, i can now say, without a shadow of a doubt, that a specific activity is a major trigger....and lucky for me, testing identified a related skill as a legitimate deficit, so i'm able to confidently say that oh no, this is not a random ODD-like behavior, its a direct result of a specific disability. but had i not kept track, i'm not even so sure she would would have been tested to look for this underlying cause. i'd even go so far as to include outside factors---meltdown moment....did he just have a snack? any sleep disturbances that day? under the weather? (you get the idea). while it might sound farfetched, who knows what patterns it may turn up....you may find something off the wall like rages are triggered shortly after watching spongebob and eating cheese...so then it would be worthwhile to investigate if your difficult child is overstimmed by the color yellow and has a dairy allergy....ROFL, i know that was about as goofy as an example as i could make.

i hope today is a better day for you.......

 

[susiestar]

I would not take a psychologist ruling something out in a six year old too seriously. Just in my humble opinion, but children at that age often do not show some or many facets of the problems that they will have. Unless they fit a specific diagnosis exactly 100%, the name of the disorder will evolve with with time as new things show up, old things change, etc... It is the nature of children to not show all they will be/do/have/need at such a young age.

I would strongly suggest contacting a children's hospital or large university teaching hospital to find a child and adolescent certified psychiatrist and a neuropsychologist. You want complete testing to figure out exactly what you are dealing with. It may take months to get in to see the doctor, so the sooner you can schedule the better. Call and find out what they have and then go see your pediatrician or primary care doctor and tell them you need referrals to X hospital psychiatry dept and psychology dept. The children's hospital in my state has the neuropsychologist located in the neurology office, so don't skip calling there if you cannot find one. It will take a lot of phone calls. You will need to tell the various people clearly what you need. Be persistent.

It is a good idea to keep the diary or log of how difficult child acted starting today if possible. Write down all incidents, what you did and didn't do, how he responded, etc... This will be incredibly helpful. If possible take some video of him raging or showing other behaviors. Sometimes this speaks more clearly than anything else.

We have a format for a Parent Report on this site. It does NOT take place of your diary, but it is a way of organizing all the info about your child into one place, one overall document that holds everything you remember. It was worked out by warrior moms here on the site as a way to keep track of everything and to let docs know all the info about our complicated difficult children. It can be incredibly helpful. It is located in the FAQ/Board Help section under MDE/parent Input. Here is a link to it: http://www.conductdisorders.com/forum/f7/parent-input-multi-disciplinary-evaluation-10/

Welcome to our board. I look forward to getting to know you better.

Susie

 

[SJB]

.ARRRRRGGGHHHH!!!!! I'm truly at the end of my rope. I don't even know if I want to fight to keep him in my home. I feel like I'm crazy. For the longest time I never let anyone know about the abuse we all suffered at the hands of my son....but if you follow through and call the authorities (it took me 8 full years to do that)....they penalize you...by all the time and inconvenience that you need to go through because you have a mentally ill child. I do know that our whole life centers around my difficult child's moods and rages.
MK

Oh do I ever hear this! I followed everyone's advice and called the cops...and I thought my life was hell BEFORE that! After that not only did I have to deal with difficult child's rages ratcheted up because I'd called for help, but the smirking when she quickly figured out that the only person who was at all inconvenienced or put on the spot was ME.

We...no I finally got through her "diversion" program and no sooner did I catch my breath but she turned around and did EXACTLY THE SAME THING that started the whole deal. And she knew full well I wouldn't--couldn't do a damned thing about it.

I don't know what to do any more. I''m punished enough here. Who needs "help" like what's out there?

 

[Marguerite]

Something I want to emphasise with regard to the people who are trying to assess your son, with a view to getting a valid label - they are spending time with him, one-to-one. This was what put a spanner in the works for us with difficult child 1 at that age, with friends, family and psychologists - they were spending one-to-one time with him at which time, of course, he seemed a perfect gentleman. But looking back at what they observed, it fit Asperger's very well.

The problem of course, we can now see (with the benefit of 20:20 hindsight and 20 years) is that anyone trying to identify the underlying "disorder" were looking for evidence of dysfunction when, of course, in a one-to-one setting Asperger's actually can manifest (especially at a young age) as something really positive. And so of course that is what they saw.

The psychologist who was assessing difficult child 1 saw a very bright, rather serious boy who really wanted to talk about birds in detail. He was involved with his father in a scientific study that required them to go out early in the pre-dawn, capture birds, measure them, identify them, tag them and release them. Certainly nothing wrong with that, nor anything wrong with a kid who is able to identify most Australian birds on sight. During the assessment, difficult child 1 would at times say, "I don't want to talk about this any more. I don't want to answer any more questions. I want to talk about birds."

That is a big tip-off. But the psychologist said, "OK, we'll talk about birds for a few minutes, then go back to the test. OK?"
And they did. difficult child 1 went on to complete the assessment and score around 130 for averaged out IQ in the WPPSI.

Of course, when the school counsellor had previously been assessing him and difficult child 1 became non-compliant, she closed off the test at that point but scored it as if he had completed it. This gave difficult child 1 an IQ score which she wouldn't reveal to me, except to say it was significantly below 100. And yet he was near the top of his class in every subject! To the school counsellor (who for reasons I won't go into here but nothing to do with difficult child 1, needed to shoot me down, big-time) this was gold - she had ammunition to attack me for "pushing this poor boy to achieve well beyond his capability."

Now anyone with half a brain knows that you can't push a kid to achieve better than he is capable of. It's illogical. If difficult child 1 were a performing seal who could perform amazing mental gymnastics but only when I was present to feed him the answers with hand signals, then that would be a valid criticism. But difficult child 1 was performing well in school, in my absence. And, according to the school counsellor (who admitted she had to close off the test because he became increasingly agitated and fidgetty) he was performing way above average, with a "borderliine" IQ.

Back to difficult child 1 and how he was perceived - when he was 10, he stayed with an elderly couple we know from church. He stayed for almost a week while I was in hospital giving birth to difficult child 3. This couple loved difficult child 1, they were very close. Sort of honorary grandparents at our church. And for a week, they lavished all their attention and time on difficult child 1, who lapped it up and behaved like a perfect gentleman. difficult child 1 played chess with them. "Grandma" reported with amusement the condescending way difficult child 1 spoke to her when she kept losing chess games to him. Then when they took him for ice cream, she reported the stilted "little professor" conversations with him, again with amusement. At the time, difficult child 1 had a diagnosis of ADHD but in a one-to-one setting with all activity revolving around him, difficult child 1 was apparently faultless.

As with the private psychologist - all attention in that test had been on difficult child 1. Plus the psychologist was prepared to be flexible. The school counsellor was not.

THis is the thing - these kids love routine and order, but they also do well if everything revolves around their interests. They are often very bright, so they really respond positively to an environment which is giving them what they want - mental stimulation and education. My boys loved every teacher (until difficult child 1 got older plus got some really unpleasant teachers) because the teacher is the person with the hand on the tiller of their education. The teacher is the conduit, someone they value for what they can give. I've found that difficult child 3 even still likes the teachers he had who were atrociously mean to him. He didn't see the meanness (as I did) but instead saw any discipline issues as inevitable because he himself was innately bad (in his own eyes). Over time as he matures, he is realising he is at heart a good person after all and that we see him as such.

Some kids still do badly in school, it all depends on how they are perceived by the other kids and by the teacher, as well as how they are treated. If their foibles are accepted and tolerated, they can do a lot better. When they are younger they often do a lot better. There are a lot of reasons for things to work well in school, or similarly - reasons for things to NOT work well in school. You can generally work out why, once you can get inside the kid's head. Sensory issues are a factor (noises, distractions, vibrations) depending on how the child is affected by Sensory Integration Disorder (SID) and to what extent. Control is another big factor. So is routine. A change in teacher (substitutes were a nightmare for us) could bring everything unstuck. Teacher attitude can play a huge part - teachers who are strict and controlling can have headaches with our kids. But teachers who are supportive, calm, aware of the spectrum of humanity in their classroom and accommodating - they have a lot of success with Pervasive Developmental Disorder (PDD) kids.

I have two, possibly three, Pervasive Developmental Disorder (PDD) kids. difficult child 1 is diagnosed Aspie. He was the classic withdrawn kid who was fine with us, but would curl up into a fetal position if people began to pay attention to him. "Come out the front of the class and get this award!" would have him in a ball on the floor for several hours.
easy child 2/difficult child 2 was odd, but brilliant, so a lot of her behaviours were seen as immaturity or insolence. In a dance class at school she insisted on having her head on the floor and would not get up and dance. She backchatted the principal, I was told, because for my girl, having her head on the floor was more important than cooperating. She was cut form the dance class and was absolutely gutted - the principal said it was because of insolence and obvious disinterest, but she never bothered to really dig to find out. If she had, we'd have had the Aspie diagnosis nailed down - easy child 2/difficult child 2 had been obsessed with feeing the vibrations of all those dancing feet, through her head as she rested her head on the floor. She HAD to do it, it was imperative. It was soothing. She would disobey if she had to, to do it. Classic Sensory Integration Disorder (SID). Of course, there were other Sensory Integration Disorder (SID) issues and other factors, but because easy child 2/difficult child 2 was outgoing, friendly, often outspoken, she slipped under the radar. The brighter they are, the harder they are to diagnose because they adapt a lot faster. As difficult child 3 put it, they get very good at "pretending to be normal".

easy child 2/difficult child 2's pediatrician won't diagnose Asperger's "because she makes good eye contact". But in fact, she doesn't. She only makes eye contact with people she knows well (such as her pediatrician!) She is now 23 and says she forces herself to make eye contact with customers. She also has realised (in her 20s) that she has partial face blindness (also fairly common in Pervasive Developmental Disorder (PDD)) and so makes a point of commenting to the customer about something they're wearing ("I like that scarf, it really brings out the colour in your eyes."). This fixes in her mind the link between the customer's appearance and what they are buying, so if they forget a bag (and she said this happens often) she can recognise them when they come back. This is one of her coping skills that she has worked out for herself.

Confuzzled has some good points - if you have people not able to agree on the label, then go with your gut and do what you can based on symptoms. Also, try to not focus only on dysfunction - we found we had to really throw a lot of mental stimulation at our kids. Boredom was their worst enemy, it led to a great increase in behaviour problems if they got bored. Trouble was, they would get bored quickly. This happened also with easy child - her teacher in Grade 1 found that the only way to handle her, was to keep giving her more and harder work. Keep the kid working.
We found the same thing with ALL our kids (possibly excepting difficult child 1) - we loaded up the computer with educational games and let the kids loose on it. As long as we had a variety available, the kids used it and it helped them by boosting their confidence for school.

In short, we gave the kids what they wanted. Don't like the feel of the label inside that shirt? It's OK, I'll unpick it and take it out. With food, it was like raising Jack Spratt and his wife. difficult child 3 won't eat anything with a creamy texture. easy child 2/difficult child 2 won't eat anything with "bits" in it. So I would cook multiple dishes, but keep them in the freezer in small serves so I could easily reheat multiple meals. At the same time I tried to desensitise these kids to the problem foods. Interestingly difficult child 3, my most autistic child has also been the one most able to adapt.

All these kids are different. difficult child 3's Grade 1 teacher was chosen because she herself had an autistic child the same age as difficult child 3. I warned her, "He won't be what you expect."
At the beginning of the day she assured me, "I understand autism."
At the end of the day she said, "He IS different, isn't he?"
By the end of the year she was saying, "I'm certain he has ODD!"

Learning to drive - difficult child 1 said when he was old enough, "I'm not going to be able to drive safely. I'm too distractible." So he chose to not drive, until he was a lot older. But difficult child 3 IS able to multi-task and so he's got his Learner's Permit almost as soon as he was old enough. What is more, he has shown a lot of aptitude for driving.

They're all different.

Marg

 

[PassedExhausted]

Thank you all for your advice and support. I found this board when I didn't feel like I could get any lower. I'm glad I did. I've regained the confidence I lost while doing the psychiatric dance again. Only I know my son best. As a few of you pointed out, he did act out at school....but it was 4 years ago. The main point is that he acts out everywhere but this school. I've spoken with his ICM...and we're looking for neuropsychs in the area or somewhere close. We're also looking into the option of keeping him in the school program he's in but perhaps just closing out the day-hab case and getting him back to his previous pyschologist and a pyschiatrist that can handle his medications. The Residential Treatment Center (RTC) is still on the table.....but not yet. I can't. I don't feel (even after all these years) that I've explored every possibility to try to help him and keep him with me. A major concern for me is that he will get to an Residential Treatment Center (RTC) and withdraw totally into himself.

F doesn't have the social skills to deal well in new or uncomfortable situations. He maintains by telling people what he thinks they want to hear and squashing any feelings to pull out later...at home...and not in a good way. Or he blindly follows, no matter what trouble is brewing. I did find out that while his psychiatrist told me what a great session they had....(and I didn't ask my son about it because I was upset about the whole "family dynamic" thing) my son all of sudden tells me Sat night that I was a liar. He tells me that I lied when I told him that I'd tell the school that he was uncomfortable having his teacher in on his session with the Dr. ARRRGGHHH!!! I did tell them...nicely. I inquired if someone else could sit in with him. I was livid....and did NOT show it to him. But I did apologize to him and asked him how he felt about the session. He tells me he was uncomfortable. So how can two people have a session together, one walks away saying what a great session it is and the other felt uncomfortable...and not good?

Interesting that one of you answered my post stating that a dr told you that your child didn't fall on the spectrum due to the fact that he makes eye contact. That's always been (and to this day still is) my son's problem. He doesn't make eye contact. Adults have to physically get in his face and ask him to look at them while their talking to him...and initially he will, but his glance always trails to the side after a couple of seconds. I thought that was significant when combined with his sensory issues, developmental delays and auditory/speech deficiencies....but no one else did.

So....thank you all for your support...hopefully I can give some insight to one of you someday!!

MK