Please read and offer any help!!!!!!!!

Discussion in 'General Parenting' started by Thinking Outside the Box, Oct 15, 2009.

  1. :whiteflag:Well, I am new on here and wish I didn't have to be here, like so many of you. Words like frustrated, exhausted, spent, hopeless, etc. do no justice to how I feel at this moment. My hopes for posting this, are that I will find support, advice and resources. I would like to say finding an "answer" would be the ultimate hope, but there may be no such thing. My husband and I have 4 children, but Brenden, our 11 yr. son, is why I am on here tonight, so here goes.

    Baby background: as a baby, Brenden, was extremely happy, and I mean all the time. He was healthy, no problems during pregnancy or delivery, full-term, and all that good stuff. The pediatricians always said he reached his milestones slower, but they said he was still within the "normal range". Talking was the one milestone he didn't reach. Brenden was 6 years old before he learned to talk in 1-3 words phrases.

    At 11 yrs. old, Brenden has completely turned our lives inside out. From the moment he wakes up, he is angry, violent, verbally abusive, demanding, severe self-injurious behaviors, continuous eating when not on medication, excessively loud whether verbal or nonverbal (such as banging objects,etc.). He does not hesitate to swing his fist, sling spit, throw food or any objects he can get his hands on, he will continuously name call, his profanity is so out of control, he throws tantrums, cries like a toddler, screams and the bad behaviors go on. He has difficulty falling asleep, staying asleep, gets up very early and the moment he wakes up his mind, mouth and behaviors are running a hundred miles per hour. He wets his pants several times a day, bites the skin off his finger-tips until they are sore and bleeding then cries because they hurt and then continues to do it more. He can't stand certain smells, sounds and certain fabrics. He has been wearing a size 8 slim pant since 2nd grade and is now in middle school. His weight flucuates from 63 to 74 lbs. He has never been over 74 lbs. He complains of leg pain and has done so for years. His baby teeth do not fall out, they loosen, adult tooth comes in and he has to have the baby teeth pulled out. He cannot answer open-ended questions, even simple ones. Multiple choice and sometimes even those are difficult. He can't express his feelings, even when sick. Decisions are practically imposssible, but gets extremely aggressive is he can't have choices. The list goes on.

    Brenden consumes all of our time and energy; he leaves no room for anyone else in the family. He has been evaluated so many time, so many doctor appointments, so many medications tried and we are in no better of a place.

    The diagnosis is always different. He has been diagnosed with developmental delay, autism, Pervasive Developmental Disorder (PDD)-not otherwise specified, add/adhd, aspergers, cognitively impaired, etc. The doctors have even gone so far to say that there is nothing wrong with him other then the fact that his parents need counseling to learn how to parent. I have had a doctor tell me that my son's problem is caused by my depression, because I was sitting in his office crying out of sheer frustration.

    My husband, myself, our families and our friends, all fear the day we may have to call the police because of his behaviors. He has tried different medications, but is now currently on Vyvanse and Geodon. They "work" enough to get him through the day at school. Mornings, evenings, weekends, holiday breaks, summer......unbearable.

    My life is Brenden and Brenden is my life. There has to be something that the doctors are missing. The medications are not a solution, barely even worth subjecting our son to-there has to be something better then putting chemicals into a body that already seems to almost be a victim of all the poisons in our environment. Brenden is a beautiful boy; his eyes sparkle like a lit christmas tree, when he does smile and on those few occasions that he says he loves me and says "ur beautiful, mom, are you my honey?" (Honey is only said to those he loves), he makes you feel like maybe there is a chance we can have our lives back. But, then 2 seconds later the evilness comes back and he reminds you that this is really the way things are.

    If still reading, I sincerely apologize for the length of my post, but I just love my son and I can't help but believe there is more for his life then this. I am desperate for support, information, advice, your experiences. Brenden deserves so much more and he deserves the chance to wake up one day and feel a "calmness" in his soul and I want my family to do more then just "survive" this hell that we find ourselves in.
     
  2. nvts

    nvts Active Member

    Melinda! Hey kiddo! We're here for you...from what you've described, I'd be more toward the autism "thing" whether it be Aspergers or Pervasive Developmental Disorder (PDD)/not otherwise specified or any of the litany of other "letters".

    Ignore the cracks about "he just needs parents that know how to parent". in my humble opinion, he "just needs doctors that know how to diagnose!" Speaking of which, who's handing out the diagnosis's?

    If you haven't had one done, I'd suggest a neuropsychologist. It's like 10 hours of testing (broken up into diff. appts.!) but it tries to pinpoint where the difficulties lie. My difficult child 1 couldn't handle any type of medications. He's still a little PITA, but he's recently confessed to actually being able to identify feelings. Didn't know he couldn't, but he told me that he never could when he was taking the medications. Surprising, I've got to say.

    Make sure you bookmark the site. You'll find a HUGE number of people on the same page!

    Gotta go, the little one is raising h-e-double hockey sticks! I'll try back later!

    Feel better hon, we know what you're going through!

    Beth
     
  3. JJJ

    JJJ Active Member

    Welcome! With the lack of growth have you tried the girlfriend/CF All-Natural diet? It has changed my children more dramatically than any medications.
     
  4. lmf64

    lmf64 New Member

    (hugs) It's time for a new doctor. When I got the blame the parent/ing diagnosis I felt like you do. It can be hard to find the right doctor and right diagnosis, but once you do the weight will be lifted.
     
  5. tiredmommy

    tiredmommy Site Moderator

    {{{Welcome}}}, you aren't alone anymore! I had a question that may or may not be relevant: Have you seen a geneticist? I'm not a doctor but it seems like it may be an avenue to pursue.

    by the way, I'm going to remove the picture of your son (he is a beautiful boy!) because we strive to maintain the privacy of our minor children on the forum.
     
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi. Welcome.
    Have him evaluated by a NeuroPsychologist. He is probably on he autism spectrum. I'm shocked that if he didn't speak until six, it was never brought up. He isn't "bad," he's different.

    Good luck!
     
  7. lizzie09

    lizzie09 lizzie

    I am so sorry you had to find this site but it is a mine of
    huge compassion and absolute knowledge.

    My son has PWS (Prader Willi Synd ) and for years I went from one doctor to another here in Ireland
    before he was diagnosed and then no help esp when I needed it
    years later. He only got troublesome at 19 and we hadnt a clue
    what to do as nobody wanted to help...GP said I should get my mother
    to help me as I couldnt cope!!! Shes dead unfortunately 24yrs!!!
    Thats what docs often think about us mums...we cant cope.

    Through this site I understand medication like I never thought I would
    and so many other difficulties and I know I am a warrior mum as you are!

    Stay with the site and your heart will be lifted.....:D
     
  8. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Welcome to the site.

    I, too, think there are red flags flying for your son for some sort of autistic spectrum disorder. His late milestones along with extremely late language is huge. Im somewhat shocked the doctors didnt have you in early interventions.

    Do you have an IEP for your son a school? I am assuming your son has problems at school and with his peers. How is is eye contact with you and other people? Does he play with toys appropriately or does he have obsessions over some toys or topics like ships or the weather or pokemon?

    I have a son who is now 28 who I never knew was on the high end of Aspergers when he was younger but he was horrible with eye contact when he was younger and he is still socially awkward. He has problems with anxiety. He always had obsessions with certain toys like match box cars and legos. He read early and voraciously. He got stuck on topics. He would bore you silly on his topic of the month. When he learned to tell time we called him Big Ben because he would tell you the time every 5 mins...lol.
     
  9. TPaul

    TPaul Idecor8

    Just wanted to add a quick welcome. My 11 year old son is on abilify and so far it has not affected him with weight gain.

    T.paul
     
  10. Nomad

    Nomad Guest

    I'm so sorry for the difficulties you have described.
    There are some similarities in behavior with- your child and our daughter.
    She too had great difficulty falling and staying asleep. There was much havoc at school and often much difficulty at home.
    We received a few different diagnosis's, but bipolar seem to be the one that fit best.
    Abilify, along with- other medications have been helpful for her.
    It did cause some weight gain.
    I can tell you that Geodon was NOT helpful and in fact, was agitating for her. This is a little unusual, but each child is different. What is common though for those suffering with bipolar illness, is to have trouble with ADHD medications and even antidepressants.
    Vyvanse might be problematic for your child if it stimulating. Think hard your child worsened or improved after taking this medication.
    Our daughter takes Seroquel at night to help her sleep and it has been very helpful.
    We have also found taking her to a therapist helpful...you have to find someone really empathetic, but at the same time one who can carefully direct/motivate/guide your child into wanting to behave appropriately.
    Family therapy at some point might also be a good idea.
    What kind of doctor is treating your son? Make sure he is seeing a child psychiatrist and consider neuropsychologist testing as well.
    Whatever the diagnosis, it is not unusual for medications (especially at first) to be changed or adjusted and then later during growth spurts or after the teen years, for other adjustments to be made.
    As hard as it is sometimes, try not to make your son your entire life. We had to go the extra mile to find babysitters, but we went out regularly (for short periods of time) just my husband and I to have some "alone" time. It is healthy to do this...a struggle to pull off...but really vital for your mental health and marriage.
     
    Lasted edited by : Oct 16, 2009
  11. DaisyFace

    DaisyFace Love me...Love me not

    Melinda--

    Welcome to our group! I'd like to offer you a (((hug)))) and a shoulder to lean or cry on if you ever need it.

    The description of your son strikes me as unusual (even for this group) in regards to the skeletal issues. Poor growth. Leg pain. Unusual tooth development. Unusual tooth development AND a significant delay in speech. Was a bone/skeletal issue ever investigated and/or ruled out?

    I'm no doctor, but if the mouth was developing slowly or improperly, wouldn't that interfere with speech?

    Perhaps there is a physical cause that is contributing to some of this child's frustration?

    I hope you can find the right doctor or specialist to give you some real answers.

    As for the "Poor parenting" diagnosis? Hogwash!!

    --DaisyFace
     
  12. Marguerite

    Marguerite Active Member

    Welcome, Melinda.

    I'm grabbing a minute after midnight here to let you know - you're not alone, it's not your fault, the autism label sounds exactly right (although we can't diagnose here, he's already been given an autism label, you say). You've been given a number of labels by different people - this happens as you go down the diagnostic journey. Each label shouldbring you close to the most accurate one. Some of the labels will be descriptive (such as Obsessive Compulsive Disorder (OCD) or Sensory Integration Disorder (SID) - you get this often simply as part of an autism spectrum, they don't stand alone in that case). Avoid the alphabet soup confusion and aim for a label which is an umbrella, it covers it all.

    I have so much to share with you - but it's very late here and I have to head for bed. It will be another 24 hours or so, then I will be able to take the time to give you a more detailed post.

    Two things I will say now.

    1) Read "The Explosive Child" by Ross Greene, it will help. Find a library copy, Google it to get info, do what you can. Also, the advice you will get here should help. This is not your fault. Neither is it Brenden's fault. The poor kid is stuck in aconfusing world that won't communicate in his language on his terms - and they are the only terms he knows.

    2) Your starting point in helping him (and while professional therapy is important, the starting and finishing point is always you and your child) is to start with him, where he is, doing what he is doing, and on his terms. That is the place to begin. As and how much he can handle. Be gentle, be loving. Walk away rather than get angry. Positive motivation, not punishment. There's no point punishing what he can't control or help. Don't judge him according to "normal" or "he should be doing better at his age". Don't try to do too much - refer back to point (1). It will help you with point (2).

    I'll talk more later. Meanwhile - some good poepole have already made some valuable suggestions.

    Help is here. And it's highly likely he will do better than you've been led to believe. The trend seems to be, with Pervasive Developmental Disorder (PDD), to give us a bleak picture. But with the right support and stimulation, our Pervasive Developmental Disorder (PDD) kids can amaze, astound and delight. Yes, they are also hard work, but when you find something that works for you both (and it's a matter of careful searching, asking questions, observing and trying things) then you can see sometimes drastic improvement.

    He may always need some level of support, it can be a bumpy ride sometimes, but we just can't predict how he will turn out. All you can do is help as much as you can, and observe how he makes use of this help in trying himself to find ways to cope and to adapt.

    I'll post more tomorrow night (my time).

    Marg
     
  13. DDD

    DDD Well-Known Member

    Welcome. I'm sorry that I don't have time today to read the previous replies so perhaps my question is a repeat. Why are weekends, holidays etc. impossible? If he is taking his medication seven days a week yearly his medication levels would be stable and his behavior more stable too. Sometimes family members don't believe in medication and chose to only use it for schooldays. Although I understand that none of us want kids on medications...the problems are everyday problems and therefore the medications should be also. Although none of my difficult children have been on those exact medications, many times the level of medication needs to be consistent in the system for the child to have a fighting chance at coping with daily living.

    You do have my sympathy. Many of us have traveled similar paths and it is heartbreaking when you love a child so much and have to watch them
    rollercoaster. It sounds as though he may not be on a consistent dose
    and therefore doesn't have the Rx helping his cope with just daily living problems. Good luck. DDD
     
  14. whatamess

    whatamess New Member

    Autism sounds right on the money. Of course with that label can come other labels such as anxiety, oppositional defiant disorder, adhd, cognitive delays. The 'evil' behaviors are the result of frustration on his part. Read The Explosive Child- it changed the way I viewed my son's behaviors.
     
  15. I apologize if I seem to not know my way around these forum things, as I am new to this and even having to guess on some of the abbreviations I find in others posts. THANK YOU, for all of advice, questions, and support from everyone that has already responded to my post. I haven't figured out how and if I can respond to each of your replies, so I am going to have to do this in one big one, sorry.
    First, let me say that I will be reading the Explosive Child; I just came across the name of the book yesterday in one of the posts I was reading! Can't wait to get my hand on it! Secondly, my son's history of doctors and therapists has sadly been a waste of time. We have come across more cold doctors and therapists since we have started on this road. Just changed pediatricians again 2 months ago and she is disgusted with the fact so many simple tests were never done. She immediately sent us to the lab after his 1st appointment. for allergy, gluten, growth plate x-rays, gave us a referral for an asap appointment. with a pediatrician. endo. Monday, I will be picking up the referral for a genetisist. We are also currently keeping a food diary for a few weeks so Brenden can be seen by a pediatrician. nutritionist who wants to check for intolerances, NOT allergies, to certain things in his diet. Brenden has just started therapy again, but was in a day program for part of the summer. Sadly, I go to therapy with-out my husband, because he feels that even though our son has such severe issues, he believes that he can control himself. My husband believes our son has challenges academically and cognitively, but the rest of it he feels is just to keep the health industry in business. He and I are def. not on the same page, but with that said, after having been married to him now for all these years, my husband seems to be a much milder version of my son and I believe he actually has difficulty understanding the issues at hand.
    The questions regarding medications, well, I am sure that I am not much different than most of you. I don't like them, but feel that for some kids, sometimes, yes, they are necessary. Vyvanse does work somewhat for Brenden; with-out it he is a train wreck. It does lessen the severity of some of his behaviors, but does not completely dissolve them. Geodon has helped his communication skills. Before, he could never clear his mind to answer the most basic of ?s and now, we can have little tiny blips of real conversation with- him. I think he is so frustrated with the way he feels inside; his insides are always racing to put out a fire. He will ask for his medication; he does not want to go to school and embarrass himself. Yes, he does take his medications consistently; none of us would survive if he didn't. But, the medications don't really kick for a good hour and 15 minutes in the morning. The vyvanse doesn't even last for a whole 8 hours and they won't up it anymore because he is so tiny. By 2 pm, medications are worn off. So that is why I say mornings, evenings, etc. are so difficult. days when there is no school-the days are so long! I absolutely agree that the kids that suffer from these issues, well, there is no light switch to turn the issues off. Melatonin works for him, he is on 5 mg; at least now he sleep some. Brenden was on abilify for only a few days, the doctors took him off right away, it just made him crazy, more insane acting then anything.

    School and IEPs! Yes, he has had them since kindergarten. His preschool teacher came to me on the last day of school and said, "ur daughter is doing great; she is very bright. Ur son, Brenden? He is flat-lined. Concentrate on ur daughter." I was devastated. His first IEP didn't go any better, they were very insulting about my son. We then did school of choice. He has made a lot of progress, as he went into first grade knowing nothing but how to make the letter B. He is now in 6th grade and is academically at kindergarten level. School has been an incredible stressor for him, til now. He is loving 6th grade with a very small class and is adapting a little bit to the "bigger kid" behavior.

    Diets? No, we are just starting to get into that. I always believed what the doctors told me, but now, I believe that they don't know anymore then I do. I feel that the doctors are missing something and I can't explain it; something just feels very off. Brenden doesn't seem to fit into most categories, as least in my opinion. I see some of the disorders and challenges that some of the children on here are faced with and I just see it and think, how can one child be plagued with so many different things. It just seems like there has to be a better answer. The doctors tell me my son beats himself because he is cognitively impaired. What does one have to do with the other? It is not a black and white answer for me. Just because they say his IQ is a 66, why is that the explaination for his self-injurious behavior! If the cause were my husband and my parenting skills, then wouldn't all 4 of the kids be more like Brenden? Anyway, back to the diet. I guess my question would be for anyone that supports them and uses them, how do you go about implementing such a thing when you have other children? Do you do the diet across the board or just put the one child on the diet? Just a lot of questions regarding the diet, but we are working on his food diary.

    So much time has been wasted because of my ignorance. I had no idea about how much information on services the schools actually never tell you about. The schools said my son was just a 66 IQ and maybe someday he would be able to use a calculator and a remote, but to plan on him always living with us. They asked me with an IQ score like his, what did I think his life would be like. They made me feel like a bad parent when I didn't want him in a self-contained classroom all day. I wanted him to participate in music, gym, etc. and go to lunch with his regular class. They said all I cared about was his social skills and even ask me if he needed to be supervised at lunch in case he choked! Like his IQ was to low for him to eat safely! I am not in denial that Brenden is different, but I do feel guilt for not realizing that I was not my child's advocate, when I thought I had been.

    B's ( I would refer to him by his initials, but if I use first and last, he would be BS and if I used his first and middle, he would be BM-either way, he doesn't come out sounding so hot.) Well, I have kept all of you that are still reading, long enough. Can you tell by the length of my 2 posts that I don't get out of the house much to socialize?!! B's list of symptoms goes on and we are tired. I am hoping to find the strength from the people on this site to keep fighting. I admit, my white flag is halfway up. Brenden has the mouth of a WHOLE ship of sailors, does anyone have any suggestions on how to dissolve this behavior? He is the only one in our home that talks like that and I am very strict with their tv time ( we have to be, tv is full of bad ideas and he is already a danger all on his own). We have tried completely ignoring him, time outs, rewards, etc. When his eyes open, the mouth opens and the profanity and disgusting names, etc. come flying out!

    Thank you for all your input and for sharing your stories. (and for my wordiness!!) Oh, I almost forgot! Brenden has very poor eye contact and never plays with toys. Bubbles and chalk are his favorite things! He def obsesses over certain things, sadly, our dogs are one of those things.
    Take care and looking forward to your posts. Thank you:D
     
  16. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    You don't need a psychiatrist for an autistic child and to me he sounds right on the money. My son has it and he is a lot like him. The interventions for autism come mostly from school such as speech (they teach them how to communicate better because none of them can do much abstract speaking or thinking), social skills classes and training, academic supports, sometimes PT and Occupational Therapist (OT). It isn't a psychiatric problem. It's neurological. The wiring in the brain is different so the person is constantly confused by the "typical" world. The acting out is due to untreated kids who get frustrated because they can't communicate and you don't know what they want.

    Some autistic kids are in therapy, but I'm in a group for parents of autistic kids and maybe half are in therapy. Autism Spectrum Disorders (ASD) kids have trouble talking to therapists...it's best if they go to one who actually is very well-trained in autism. Also, half are on diets, half are not. I truly don't see any difference either way, but trying never hurts.

    We took my son for a genetics test too...came back normal. At any rate, I think he needs to see a neuropsychologist. They do intensive testing that takes hours. They are psychologists with special training in the brain and many of us feel they are the best diagnosticians.

    Good luck, whatever you decide to do.
     
  17. Josie

    Josie Active Member

    I was also going to suggest the girlfriend/CF diet. My daughter's behaviour improved dramatically when she started it. I would go so far as to say she is a easy child when she stays on it. For us, it was "the answer".

    I got her tested through www.Enterolab.com to find out about it. I'm not neccessarily recommending that you do that because what convinced me that she needed it was her response to it. I would encourage you to try it, very strictly, no matter what the testing shows. My other daughter had stomach problems from gluten and casein and it never showed up on a test.

    In our family, we all do the girlfriend/CF diet. At first, I planned on eating that way at home and eating whatever I wanted when I went out, but I felt so much better on the diet, that I always do it. I think it is hard for kids on this diet to be around other children when they are eating cake, cookies, etc., so I feel like home should be a place they don't have to have that. It doesn't hurt the other kids to not have gluten in the house. Allowing them to eat whatever sends the message that the girlfriend/CF food is inferior. Believe me, it is possible to find good girlfriend/CF food. You also never know how it might benefit your other kids to be on the diet.

    Personally, I felt a fog lift when I went on the diet. I think, if your son needs this diet, it could help his cognitive issues as well as his mood issues. I also believe if this is a child's problem, it will be hard to get it under control by medications if they are still eating it.

    I hope you can find an answer.
     
  18. Marguerite

    Marguerite Active Member

    Melinda, I've grabbed a few minutes this morning (Aussie time) to get back to you. I'm glad you've updated a bit in the meantime.

    A few things you've raised -

    1) You feel your husband has what your son has, in milder form - yes, that happens. We think it is so in our family too. But it needn't mean the dad has to be disengaged. However, it does make it more difficult for ANYONE with symptoms along this line, to be able to cope with something stressful and challenging. There are ways. We'll help you work on him.

    2) The IQ test. It is, frankly, meaningless in terms of assessment of your son's intelligence. My reasons - your son has obvious, diagnosed, defined, language impairments. And IQ tests are generally language-based. BOTH my boys 'failed' their first IQ tests too, it happens commonly in Pervasive Developmental Disorder (PDD) especially where there is language delay. To understand this, you need to understand the ORIGINAL purpose of IQ tests, and the circumstances in which they were developed. A group of "normal" kids (normal by standards of the day, which would not have included kids with any significant impairment because they wouldn't have been in the group chosen for testing) were used to set the standards. These kids were tested (using similar tests) and the results graphed. At the halfway point, a line was drawn and declared to be 100 (because exactly half the tested group were above this, half below it). Very arbitrary. And the scores were ranked on either side of this line. It's purely a numbers game. That's how we know that a score of, say, 130, corresponds roughly to the top 1%. Similarly, a score of 70 should correspond roughly to the bottom 1% of the population.
    But remember - the original testing was NOT done on kids way outside the norm. And it would not have been done on kids with any significant language delay (or if it was, it measured them in the low IQ range and skewed the results for everyone, downward).
    All IQ testing is (or should be) is a guide. Once you get a score that is way outside the normal range, you MUST take error into account. That error can be scientifically assessed using Standard Deviation. To be given a score of, say, 143, is meaningless when a score like that is accompanied by an error factor of plus or minus 8 (I haven't got the mathematical symbol for it easy to hand). This means that while the child's scores may calculate out as 143, they RANGE from 135 to 151. The further a score goes from 100, the larger the error, automatically.
    IQ tests are still important, but you have to know how to use them. It sounds to me like whoever told you those scores, gave you exactly the wrong information (because they didn't get it, themselves). The vital information you need from that testing (and all future testing) is - what were the sub-scores? How did he score on each little piece of the test? He may have done brilliantly on mazes, for example. Done appallingly on language-based tests. This information is VITAL in telling you his strengths and weaknesses.
    IQ tests - when difficult child 3 was first assessed he was 4. His language skills were poor, especially his verbal scores. He actually was able to read and understand what he read, much better than he could understand what was said to him. This is still the case even though his language now scores well within normal range (some of his vocabulary is now in the superior range). A casual speech pathology assessment NOW scores difficult child 3 as normal. However, his (absolutely brilliant and thorough) speech pathologist analysed the sub-scores of his speech test and said, "He will always face frustration because although his vocabulary is astounding, his ability to retrieve words and find the right word will always lag. This is a factor of his language delay; at the time he was learning his language, his brain was less malleable than that of his peers." She gave us some exercises to do with him to help in this area, but he will always find it difficult. Indeed, as he gets older his speech dysfluencies are becoming more of an issue. His mind has concepts he wants to communicate, but his brain has trouble finding the exact words he wants, quickly enough.

    Back to IQ test results - difficult child 3's early results were not given to us, beyond them saying he was "borderline". We were told he would never attend a normal school, and wouldn't be ready for ANY school by the next year; we should wait until he was 6 when the law said we must enrol him somewhere, then put him in a "special" school. They didn't use the word "retarded" (because it's not politically correct) but that is what they meant.
    This is despite them knowing that he was reading numbers and letters (as well as some words and short sentences) at 4, that he had been playing piano and reading sheet music for a couple of years, that he was a skilled computer user and had been since before 12 months of age. They said that such savant skills were a facet of his autism (and yes, he is definitely autistic, my boy) and were a mimic of normality, there was really nothing going on inside that head.

    They were wrong. And the more we know about savant skills, the more is recognised that in a narrow area (sometimes intensely narrow) that person IS functioning, at a high level. It is NOT a mirror of normality. It's just that in some cases, the window of function/interest is so narrow and so extreme that their lack of function elsewhere seems so dramatic.

    So I strongly suspect your son has a much higher intelligence than a score of 66 would indicate. And think - if I am right, and everyone around him is treating him like an idiot (literally), then how would you react? Wouldn't you want to kick everyone and everything in sight? I know I would.

    A common facet of autism (especially high-functioning autism) is a keen sense of injustice. And they can react with violence, when they feel intensely frustrated by what THEY feel is unjust. They develop their own understanding of the rules around them. For example, difficult child 3 knew that it was a school rule that hitting other students was not permitted. However, his own observations showed him that other kids could hit him and not get into trouble (because they knew to do it when no teacher was looking). But if difficult child 3 hit back, he would get seen and get into trouble. So in difficult child 3's mind, the school rule was modified to "hitting another student is not permitted, unless that student is difficult child 3. Then the kids can hit and not get into trouble."
    He also learned that first comes the name calling, then the hitting. One day at a new school a kid got impatient with him just standing there and said, "Get out of my way, dummy!"
    difficult child 3 stood there facing the kid and quietly said, "Go on. Hit me."
    The kid ran to get a teacher (because at this new school hitting was NOT permitted even covertly). The teacher happened to be the principal who told me about this afterwards. It seemed that difficult child 3, far from trying to start a fight, was simply implying to the kid, "OK, you called me names. The next thing that happens is, you hit me. So hurry up and do it. I want to get it over with."
    Very sad. And credit to the other kid for fetching a teacher to sort it out.

    Kids are often really horrible to someone who is different, especially someone who cannot fend for himself. I thought what difficult child 3 went through was exceptional. It wasn't. It seems to be a common thing in society for people (otherwise intelligent, allegedly law-abiding) to deliberately try to upset and cause trouble to those who are less equipped to cope.
    A feature film was made here a few years ago called "The Black Balloon". My three younger kids had the chance to be in it as bit players. We got to know the male lead actors, playing a teen with profound autism (non-verbal) and his brother who tries to cope and is a bit of a mess emotionally. To get into the role they actually went out in public in character to see how effectively they could play it (and be convincing). The young man playing the autistic brother was Luke Ford (his next role was as the adult Alex Connell in "MUmmy III"). In the special features on the film's DVD, Luke describes how there were times when his co-star (Rhys Wakefield) was not around, and he was horrified at how many people (who clearly should have known better) used this opportunity to try to deliberately provoke him into a rage or meltdown. He said it happened far more than he would have thought. To research the role he spend a lot of time with the profoundly autistic brother of the writer/director, so he knew a lot of the story from the family's point of view. But to find out for himself from the point of view of someone with autism - it horrified him, just how badly they are treated when people think they can get away with it.

    We don't deliberately mingle with people with autism. However, because over the years we cross paths, we get to know people. difficult child 3's drama class has a number of autistics and Aspies in it. A neighbour if high-functioning autistic (and good friends with difficult child 3). Another neighbour has a son who is profoundly autistic and handicapped. However over the years we've seen this lad make amazing progress. He's now about 12 and beginning to talk with comprehension. There's still a lot of jargon and echolalia, but in there is some really good stuff (including "I love you, Mummy" followed by a hug) and expressing his needs. His face blindness is a problem; it's not complete, but I've noticed he responds more to voices than to faces (difficult child 3 does the same; so does easy child 2/difficult child 2 who as an adult realised she has partial face blindness, or prosopagnosia, not uncommon in Pervasive Developmental Disorder (PDD)). This boy will look blankly at me until I begin to speak. When he hears my voice, then he recognises me.

    I think I said before, the key to helping these kids is to first meet them where they are. The same goes for your husband. Chances are, each of them has got into a routine of coping, found what helps them and sticks to it like glue. Any attempt to break them out of their comfort zone will trigger stress and potentially, a rage. A comfort zone can be physical or Occupational Therapist (OT) can be mental. Denial is a form of comfort zone.

    Where they are - their interests. Their obsessions. In "Son Rise", a story of a man who claims to have led his young son from autism to normality, the father describes his son sitting on the floor spinning plates. So the father got his own plates and sat beside his son and began to spin plates too. After some weeks or more of this, a breakthrough came when the son saw one of his father's plates beginning to wobble, and reached out to correct it. After tht they sat spinning plates together. From there they made slow progress but it was still progress. The lesson even a very young (and apparently low IQ) child can learn from this, is - "this person has joined with me here doing what I feel safe doing. I can trust this person because this person is an extension of me and is in my world."

    You work for that trust and have to keep working to maintain it. Don't jeopardise it. The kind of discipline I suspect your husband is dishing out, is perhaps how he was treated (which can't have been good for him) but may well be perfectly OK for most people. But for people who have poor comprehension; poor impulse control; communication issues - these methods are a recipe for disaster. The Explosive Child explains why and explains the alternatives. Use it on your husband also.

    My husband was unable to "get into" Explosive Child. So I summarised it for him, taught it to him and over months (years?) we have both slowly improved our parenting. Still a long way to go sometimes, especially between him and difficult child 3, mostly because husband is still a product of his own upbringing plus his own almost certain Asperger's. However, he is really doing an amazing job in trying to find a way to get through to his son.

    That's what I really want to share with you (and we will need to do this over time) - my own family situation is a bit similar to yours, in having a very challenging Pervasive Developmental Disorder (PDD) son with a husband almost certainly also on the spectrum. I suspect mother in law could also be a factor - she lives nearby, there have always been some oddnesses about her behaviour but because she's a matriarch, she's "allowed" to be how she is. The older she gets, the more individualistic she is becoming as she sees she has earned the right to be herself.

    I'm not arguing! But I find I have to treat her with kid gloves sometimes, and find ways to deal with the occasional conflicts.

    One very important thing (which also tells me your son is a lot brighter tan credited) - your weekends are worst, because he's not in school. School provides a routine, but so does home. But school provides mental stimulation, which is VERY difficult to do at home, especially when you have been told to lower your expectations.

    Try giving your son intellectual stimulation in areas you know he's interested in. If thta means he likes making mud pies, then set him up with a bucket of mud and some pie plates. Put the housework on hold and you and your husband go out and make mud pies too. Don't use your son's mud, get your own until he is ready to share.

    In difficult child 3's case, he likes bubbles. So we set up a bucket of dilute bubble mix plus large bubble wands. We put it outside (permanently set up) so anytime he wanted to, he could go outside, lift the bubble wands out of the bucket and let the wind make bubbles. Often he would ask me to come out too and blow bubbles. So I did - I would stop what I was doing and go outside to blow bubbles. We also got some small wedding-sized bubble bottles and gave him one to take to school. It lived in his shirt pocket.

    That's one more thing I mean when I say, "Begin by meeting him where he is."

    Got to dash now.

    I'll be back later, it could be another 24 hours. Depends on how we go tonight picking up the kids from their honeymoon!

    Marg
     
    Last edited: Oct 16, 2009
  19. susiestar

    susiestar Roll With It

    Welcome!! There is an awful lot of info here that you have given us and have been given. Your son and husband are blessed to have you. I must say I sort of smiled when you spoke about your husband. I have a similar situation with my husband and with my own dad/bro.

    I think the teachers, school staff/administration, doctors, therapists, etc that you have seen should be sued for malpractice and then taken out and horse-whipped. So many red flags for many problems are there and were there early on and these people failed you and your son. There is more wrong with those people than there is with your son!

    There are many professionals in many fields that can help. While some here prefer neuropsychs because they did a good job with their kids, others here have had horrible experiences. I had a developmental pediatrician evaluate my son and it was about 6 hours of testing. He was not just tested by the dev pediatrician. They have a team of different experts in a variety of fields and they each tested my son. Then they spoke together about the results and problems and best treatment options. This is called a multi-disciplinary evaluation and is usually found in university and children's hospitals. I lucked into it by accident. It is another route you can try if seeing a neuropsychologist is difficult. Or if you want another opinion.

    My Aspie has seen a psychiatrist since he was 6 years old. Not all kids on the autistic spectrum are helped by medications, but the medications that are helpful should only be dispensed by someone with certification in child and adolescent psychiatry or developmental pediatrics. Our dev pediatrician was also certified as a psychiatrist but I don't know if other dev peds are. medications won't "fix" autistic spectrum disorders but they CAN help some of the symptoms and can make life a lot better for some children and families.

    Like your son, Wiz (my difficult child) would ask for his medications. He never avoided taking them. If he did start to balk on a medication we talked and it was because of a side effect. Then I called the doctor and changed it. Now, at 17, he is still on medications and it is still because he can tell a positive difference in how he feels and how others treat him.

    I would urge you to find a GOOD Occupational Therapist (Occupational Therapist (OT)) and to have him evaluated for Sensory Integration disorder. He is long past the usual time for this, but it may provide ways for you and he to handle some of the quirks. For more info on this I suggest The Out Of Sync Child by Kranowitz and The Out Of Sync Child Has Fun (same author). The first explains the problem and some ways to treat it. The second has a lot of ideas for fun activities that fit your child's sensory needs. We found that by using brushing therapy and providing the right sensory diet our youngest avoided the Aspie diagnosis and it greatly calmed our difficult child. thank you would have been just barely into Aspie-dom, but now most of the problems are gone. he is quirky but it doesn't provide many problems for us.

    It is also one of the only things that is treated without medicines and can make a HUGE difference in a child's life. My thank you couldn't sit through a church service unless we were in the very back. the organ bothered him even then and we would have to take him out halfway through. After a year of brushing and work on the sensory stuff he could not only sit through a service but ENJOY it also.

    I also strongly encourage you to write a parent report. It is a format for organizing all the info about your son. years ago some parents worked it out so that all the info from all the "experts" would be in one place. It helps communication a whole lot - esp when you can give copies of the report or parts of it to a new "expert" and save yourself a lot of time. http://www.conductdisorders.com/forum/showthread.php?t=10 is the link to it.

    One last word of advice and I will end this tome. The ONE thing that I wish I knew from the beginning and didn't is that my "Mommy Gut" or "Mommy Instincts" are NEVER wrong. No matter what the docs or pros or experts say, if your gut says "NO NO NO NO NO" or even the quieter "NO" that is the ONLY answer that should rule the day. The times I made horrible, wrong, hurtful decisions were when I ignored my instincts.

    The experts spend 5-15 minutes with your child. Maybe an hour if they are doing testing or a therapy session. They are experts in their fields (or not and are pretending to have a clue because they got through medication school). How long do YOU spend with your child? YOU are the true expert in your child. You may not know what medications do what, or the names of certain behaviors or symptoms or whatever. You may or may not have gone to college, or even finished high school. YOU are still the one who knows the MOST about your child. Period. The experts may try to intimidate you or confuse you or treat you like a child. YOU can still say NO. In fact they have to get you to say YES before they can do anything. Think about that. Even after all those years of schooling and practice and experience in a field they still have to get you to say YES to be able to do anything with/to your child.

    That is because YOU are the true expert in the child. Makes you stop and think, doesn't it? When I finally realized it, WOW! There was no stopping me. I made a lot fewer really big mistakes after I accepted that.

    I will say goodnight now. Many hugs, and welcome to our forum!
     
    Last edited: Oct 16, 2009
  20. You and the other parents that have responded to my post come across so calm and together! I am glad u were able to get a smile regarding my husband, I must admit, I've many a smile over things he does and says. Thank you so very much for the link to the parent report; it looks very helpful! Brenden was evaluated at a sensory clinic; the report had no surprises! Sadly, I am sure there are many parents who could sue and horse-whip "doctors" in many of the medical fields we parents find ourselves involved in! The mommy instinct is something I struggle with, I have it, but I guess I haven't been brave enough to trust it. It is wonderful that you and your husband have found ways to help your son and he is doing well!! We have an 18 yr. old with-out any challenges like Brenden, but I find that I feel almost a comfort knowing that Brenden may never have to face some of the things my oldest son has had to. As a parent, I want all 4 of my children to be who they are, but I want them to be great at it, if that makes any sense. Thank you again for sharing with- me; I think I will find this forum very helpful and uplifting.
     
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