Total newbie - let me spill my guts

Discussion in 'General Parenting' started by weary, Mar 20, 2013.

  1. weary

    weary New Member

    I'm going to try to briefly give you the rundown on my family situation, partly in the hopes that some of you may reply because you recognize yourself in it and can re-assure me things can get better. Also to hopefully offer some comfort to those people who may see in our history some similarities.

    Hilariously enough, when we met 14 years ago, my husband and I were both therapists. We had a great deal of experience in working with kids and families, substance abuse, assessment, and the like. When we met in our late 20's, we were both already burnt out and wound up switching careers. But having a "special" kid has shown us that no amount of book knowledge prepares you for being a parent.

    During my pregnancy with my darling V ten years ago, he was CRAZY active. I mean, the kid never stopped moving. As an "older mom" i had to do periodic stress tests where they hook you up to monitors to make sure the baby's activity is good. The idea is that if you get 20 movements in 20 minutes, you are on track. Well, we'b be out of there in about three minutes, because he never stopped moving. This continued as he was in the nursery after birth in the hospital. An overnight nurse brought him to me to feed at 5am one morning and said "THIS is a FUSSY baby." I should have snuck into the nursury and changed arm tags then.

    VERY tight swaddling was the only thing that helped. He woke up every 1.5 hours for months. He had a sensitive gag reflex so if we let him cry for more than 3 minutes he'd throw up. This continued until he was over two years old. Picky eater, sensitive to textures, loud noises. Once while watching a superbowl my loud husband cheered, my little 1 year old cutie sobbed and threw up on me. I've been thrown up on at Disney world, in bermuda, in paris. When he would get just a little bit overtired he would screech for 20-30 minutes with nothing that could console him until he either threw up or passed out. If we tried to pick up and comfort he would punch and kick. this is at like 2-3 years old. Every couple of months he'd wake up in the middle of the night confused and crying, and just scream and scream for 45 minutes without opening his eyes. We couldn't make him wake up or stop until he exhausted himself.

    Was always rather fearful, never wanted to be in any room by himself. Hated sleeping in his own room and would bring his belongings to our bedroom door and sleep outside the door every night. Because of the bears that might come in his room. Finally we got a bunk bed and he became convinced that bears could not climb the ladder, so at three years old he finally started sleeping through the night in his own bed. Also always shy in new situations, in preschool with other kids.

    NEVER had any behavior problems at school whether preschool or elementary. Still doesn't. He is a model child outside our house. He comes in the house though, and blows a gasket. Around 4.5 years old he was having problems with incopresis, which led to medical tests with a pediatric gastro, then referral to a behavioral psychologist who helped us understand his blow ups at home are about anxiety, and that he probably had sensory processing disorder. This would explain his weird unexplained extreme meltdowns. Took him to Occupational Therapist (OT), yes, diagnosis confirmed. Six months of treatment. Our understanding was that with this treatment, combined with a maturing neurological system, that his moods, temper would even out as he grew older.

    Well, he's now in third grade, is on the A/B honor role. Gets straight a's in reading and spelling. is an avid reader. So yes, he has matured cognitively, but what this means is now he can verbally express his rage and hurt in extremely creative and descriptive ways. to daddy: " I HATE you and I will always hate you. Don't you understand that every time you talk to me it's like a dagger going straight through my heart?!"

    My husband is not perfect and has unfortunatly stuck to a "consequenses" model of discipline with has completely NOT worked. I've always used more of a "float like a butterfly, sting like a bee" approach and try to shape his behavior by working with it rather than butting heads. this kid is really smart and even more stubborn.

    Recently, in the past six months I've become more concerned because the general irritability has gotten more frequent, and the intensity of his anger and hurt feelings have been expressed quite openly. Everything is extreme. Everything is our fault, especially my husband's fault. I've also noticed he's more withdrawn from friends, playing the xbox rather than outside like he always used to. When he does go outside to play, he hangs back, fearful to join the group until just the right moment.

    Anyway, we've always know he was different since the day he was born, but it's kind of gone from "fussy baby" to "sensory processing disorder" to "oppositional defiant disorder." My husband and I are both very very sensitive to the genetic risk he faces - alcoholism on both sides of the family, I was an undiagnosed child with depression who didn't get treatment until I was 25. I've been on Paxil for 19 years and it changed my life.

    A few things came together in the past three months to smack me on the head and make me realize what had been in front of me the whole time: depression. Again, I know enough to be dangerous, so I got hold of a self report child depression inventory and had V fill it out for me last week. I was SHOCKED, because I try REALLy hard to let him know i'm a safe person to talk to, he can talk to me about anything; and he always says "you KNOW I don't LIKE to talk about my feelings." He seems to have answered the questions honestly, and it broke my heart but validated things as well. Poor boy feels ugly all the time, thinks about killing himself, feels he's not good enough. Scored in the 95th percentile for depression and specifically low self esteem.

    We have an appointment with a neuropsychologist clinic on April 9th, and I'm counting the days. I've joked with my husband that I should just start splitting my paxil and sharing it with him. (kidding!!!!) I don't want to sound like I'm some crazy mom with a big ego, but I really do believe this is 95% biological for him. Not to say that we are perfect parents, but because my husband and I were raised by VERy imperfect parents we have tried our best to be mindful non-reactive, proactive parents. Our second son is pretty typical, and makes us fell like "****, we've got this parenting thing DOWN." Again, he still has temper tantrums and is a normal kid, but all of the regular boundary setting, proactive parenting stuff you read about actually has worked quite well with him.

    I am PRAYING that we can quickly find a medication that will help him. I'm perfectly thrilled to do other interventions, my experience with my own recovery from depression is that once you have a medication that works, it's like someone has taken a brown paper bag off of your head and you experience the real world for the first time.

    Okay, just wanted to get all that out there - totally open to your opinions, advice, and experience.
  2. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Welcome Weary,
    Glad you found us but sorry you needed to. This is a soft place to land though and you will find much support here. It sounds like you are on the right track with having a neuro-psychiatric evaluation done. That combined with the info from our son's psychiatrist really gave us a better picture of what was going on with our difficult child.

    No real advice right now except be sure you and husband are taking some "me" time and some "us" time which can be so difficult to do when you have a difficult child.

    Sending welcoming hugs your way.
  3. buddy

    buddy New Member

    Hi weary. Does he have friends? Real bff type friends? What are his interests/hobbies?

    I'm glad you are going to a neuropsychologist. That will help you sort out if he has a series of things going on or if there's an umbrella diagnosis to explain what's going on.

    As another who was initially trained in behavioral therapy, you are right. Kids who are differently wired do not do well with consequence based therapies as the primary intervention tool
    Often not even positive reinforcement (traditional types) of ideas esp in home and community settings work.

    Have you ever read. THE EXPLOSIVE CHILD by Ross Green or WHAT YOUR EXPLOSIVE CHILD IS TRYING TO TELL YOU by Doug Riley? They explain why this is so and why their self concept tanks with such systems. Imagine being in trouble, esp with your parents every single day. Many, multiple times. Imagine not being able to change behaviors because you lack the skills. Even if kids can say what they do wrong, it does not mean they have the skills to do better.

    And my experience with my son and students is that sensory integration disorder waxes, wanes, morphs, and often needs to be accommodated for life.

    I might suggest an updated Occupational Therapist (OT) evaluation to bring to the neuropsychologist and maybe an auditory processing evaluation with a specialized Audiologist. ( not done for routine audio evaluations). Just to cover your bases. He might be pushing thru but be so wiped out by the time he comes home that he falls apart.

    Anyway, Welcome! Many of us can relate. Its challenging to raise a child who is differently wired. It can make us much better people though.

    Oh, by the way, there are many of us who work /worked in related fields, and you're right. It's humbling. No way professionals know what it's really like.
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there and welcome to the board (but sorry you have to be here).

    If you are going to a neuropsychologist you are doing the best you can do. Remember he's not a "bad" boy when he acts up at home. He is differently wired and can't help it and needs probably a special type of parenting. Behavioral therapists don't tend to be very successful with our children because they don't respond the way other kids would to consistent discipline or consequences. It isn't likely a discipline problem. It is more likely an inborn difference neurologically...Aspergers? Since he is so smart, that will definitely help him, but he probably needs some interventions that can be given at school. It's not your parenting either. Remember, this child was different even in the womb.
    By the way, I'm another Paxil responder...was a miracle medication for me. Also really struggled with depression. Also, medications probably won't be enough for him since he is just a child. medications alone weren't even enough for me...I still needed extra help.

    Believe it or not, most kids don't have horrific temper tantrums. The only one I had who did was my son on the autism spectrum and that's because he was so sensitive to stimuli and easily got overtired or overloaded. He had terrible sensory issues too.

    Keep posting. We care and would like to be able to support you.
  5. SuZir

    SuZir Well-Known Member

    Hi and welcome!

    Sorry, couldn't help but LOL for your mentioning of bears and beds. That certainly sounded eerily familiar.

    It seems you are lining up your ducks just nicely and I don't have much of an advise in that. I'm not sure I have much reassurance that things would change to give. My very fussy (and colicky and overly sensitive and melodramatic) baby is now a fussy young adult. The basic temperament doesn't change. Mine had lots of social skill issues, still has and some of them have caused nasty things that cause him trouble still. Good news is that in the big wide world there is also room for fussy people, it just takes little more to find that good niche. School years tend to be hard. Kids are expected to fit to quite a tight role to be accepted. After that there is often more room to be little different.

    It sounds that your son has some clear neurological differences. Some of them can be diagnosed, some are likely not meeting a criteria or are just things that are 'little different.' That will cause your son a lot of stress daily. He likely has to work very hard to just manage his school days and that shows at home. That hardship also does make a tent to his self image. He is big enough to know, that he isn't really fitting in so easily and that is hard for a kid. I would also be very careful and look for signs of being ostracised or bullied by peers. That makes huge havoc to sensitive kid and they do not tell at home. All that can easily cause depression even when things at home are well and in that case simply medicating will not solve the issue, but also interventions to make his life less overwhelming are needed.
  6. TeDo

    TeDo CD Hall of Fame

    Just a thought that popped into my head as I was reading your post. You could have been describing my difficult child 1! With the sensory issues since birth (yes, dad's VOICE tone, pitch, whatever could/might feel like daggers), doing better in school than at home (routine/scheduled time vs relaxed/unscheduled time), blaming others no matter what, few if any friends, etc all sound familiar and sound very spectrumy. My difficult child 2 is also on the spectrum and his symptoms have actually gotten worse with puberty. difficult child 1's behavior got much worse around 3rd or 4th grade. The work at school started getting harder and more expectations were place on him all around. It made his anxiety pique to new levels because he just wasn't able to do it all, school AND home. We tried an antidepressant because he became soooo depressed that he was curled up in the fetal position sleeping most of the time. It seemed to help at first. Then gradually (and I mean gradually), he became more "angry" and seemed to be more defiant. It ended with him becoming so violent he ended up in a psychiatric unit and some legal trouble. As soon as we stopped the antidepressant, things started getting better. Be careful, very careful with medications IF he even "might" be on the autism spectrum.

    What has made a HUGE difference in our house (yes, things are MUCH better) is a high sensory diet, routines at home, written expectations and chores, etc. What got us to this point in the first place was my reading the book The Explosive Child by Ross Greene and trying to implement his methods. What I found was that difficult child 1 thought VERY different than most people. His points of view and his comprehension of things weren't what most people have. His whole view of the world and everyone in it is very skewed. That helped me see HIS thinking patterns so I could predict and manage situations that will or might cause issues for him. It also helped me see that I needed to spend a LOT of time teaching skills that most kids learn through experience. He wasn't capable of learning "life" skills without being taught at length. Punishment does not teach, it only made difficult child 1 feel even worse and contributed to his depression.

    I am glad you are seeing a neuropsychologist. That is the professional that finally sorted everything out for us. It has been huge. I hope the one you're seeing is a "good" one.

    Welcome to our little corner of the world. Keep us posted.
  7. InsaneCdn

    InsaneCdn Well-Known Member

    Keep in mind that mood disorders like anxiety and/or depression are not uncommon as secondary diagnoses... that is, these are not the base or original problem, but rather are a result of other issues that have not been caught and dealt with. been there done that.

    Hope that evaluation is really comprehensive...
  8. Calamity Jane

    Calamity Jane Well-Known Member

    Hi Weary,

    I can't add anything but a warm welcome, and I think you and your husband are doing everything possible under all kinds of stress to help your son. I am hoping the evaluations and the recommendations come quickly, and you and husband maintain the patience to continue with this very challenging situation. Many hugs. If at all possible, take some time for yourselves.
  9. Liahona

    Liahona Guest

    Wanted to add my welcome! Have you ever read The Bipolar Child? There is an excellent chart in that book for charting medications, mood, energy, sleep, ect... All in one place.

    Sounds like your son has symptoms that could be a number of disorders. Please keep us updated on what the neuropysch says.

    I'm not sure if anyone else has suggested it. If they have please forgive the repetition. There is a form on this called the parent report. It helps you get all the information that might be helpful in one place to take with you to the dr.

    Again welcome. It sounds like you and your husband are very proactive on the ball parents that love your son very much.
  10. whatamess

    whatamess New Member

    Asperger's, Asperger's, Asperger's. And again, Asperger's. From your opening sentence to your last...Asperger's. And no, behavioral interventions will not work.
  11. HaoZi

    HaoZi CD Hall of Fame

    I'm with whatamess (though I might be biased) - this sounds like very Aspie behavior to me. It might not be ALL that is going on - but I think it's one more thing to look into.
  12. InsaneCdn

    InsaneCdn Well-Known Member

    Well, I'd have been "far" more broad in my list of potential flags there... sounds to me like it's Pervasive Developmental Disorder (PDD)-not otherwise specified, Aspie or... Autism Spectrum Disorders (ASD) at some level.

    (some "broad" list... lol)
  13. cdngrl

    cdngrl New Member

    Your situation sounds somewhat similar to ours... I read here frequently, but rarely post, but for some reason I felt compelled to open this thread again and reply. I also have a son in grade three who behaves as a model student (and does very well academically) but loses it at home (and has had similar issues since infancy), and over time we have come to recognize that anxiety and sensory processing issues are underlying a great deal of his issues, but he is does not seem to fit well into any diagnostic "boxes". I work in a related field, and have implemented consistent positive parenting approaches... and I have sought out help from many different professionals, as I recognized around the time that he turned 4 that his challenges were beyond what "good parenting" could solve. He has been seen by 2 psychologists (no neuropsychologists here), 3 psychiatrists, a pediatrician, and numerous other counsellors/mental health clinicians. Aspergers has been on the table (diagnosed by 1 professional but not agreed upon by the others, and as someone who works in this field although I KNOW that he has many symptoms that are consistent with Autism Spectrum Disorders I am not conviced that he truly meets all the criteria or that the underlying reason is the same). At this point, the primary diagnosis is Anxiety Disorder not otherwise specified. He has some features of depression (including previous suicidal thinking), but does not meet the criteria for diagnosis with depression; most recently the new psychiatrist who is seeing him stated that although he would not formally diagnose it at this time, he believes mood dysregulation is an appropriate working diagnosis (will be Disruptive Mood Dysregulation Disorder in the DSM-5 when it comes out in May). My DS does not actually meet the criteria for that diagnosis as his symptoms wax and wane, but I do feel that other than that it is a good fit and it acknowledges the mood component of his challenges. We are taking a multifaceted approach to his treatment. He is currently on Sertraline and Abilify (medications were introduced in the fall, but originally he was taking Seroquel rather than Abilify but depressive-type symptoms re-emerged and the new p-doctor recommended trying a switch to abilify). His mood symptoms are currently much, much better, but anxiety symptoms are still present (though more manageable). We are about to start another attempt at CBT, now that he is more stable again. We have also been using a bit of the explosive child approach (on our own), as well as some autism-based approaches (previously on our own and now with support of an autism specialist who actually happens to be a behaviour therapist but is using a very broad cognitive-behaviour type approach that is tailored for my DS) focusing on teaching understanding of emotions, understanding verbal and nonverbal cues from others (as he was often misinterpreting others' intent which contributed to his anxiety), and self-monitoring and self-regulation skills. I am hopeful that he will continue to develop skills and tools to manage better over time, although I now recognize that he will likely always have some challenges with anxiety at a minimum. The medication has certainly not "fixed" the issue, but my goal with the medication was to get him to a point where he would be more able to work on the skills he needs to build. I am not holding my breath, but I am trying to stay positive.

    I apologize for my longwinded response... all this to say, you are not alone...
    Re: Aspergers, depending on where you are, they may not even consider giving that diagnosis anymore as it is not in the new DSM (which will be out in May), so the diagnosis would be Autism Spectrum Disorder if those criteria are met... and no diagnosis on the spectrum if the criteria for Autism Spectrum Disorders (ASD) are not met.
    Regardless of diagnosis (which it seems can be a nearly impossible maze to navigate), figuring out the best (combination of) treatment for each individual child can be challenging. I truly hope you will find the answers you need quickly and you and your child will experience good success in the very near future!
  14. buddy

    buddy New Member

    Cdngrl, perfectly said. Great job. I agree, be open to what works.
  15. lovelyboy

    lovelyboy Member

    This sounds very familiar! Its like describing my son.......
    I also got an Aspie/ Pervasive Developmental Disorder (PDD) not otherwise specified feeling while reading your post!
    The psychiatrist said Pervasive Developmental Disorder (PDD) not otherwise specified specified, neuro said Aspie and clinical psychologist mood dysregulatory disorder...psychiatrist said MDR is part of Autism Spectrum Disorders (ASD)...and he also has the high anxiety and depression wich results from his inabillity to ' fit in'... so we are on SSRI and Risperdal, had Occupational Therapist (OT) and ST....want to start sessions with clinical psyc again! Pubery kicking in isnt really helping!!!!:(
  16. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    If he has Autism Spectrum Disorders (ASD)/Pervasive Developmental Disorder (PDD)-not otherwise specified medications won't take the problems away. Depression is different. Autism Spectrum Disorders (ASD) kids literally have their own way of thinking that no medication can change. medication may or may not help some of his difficult behaviors, but he would still need other interventions. Depression is a decline in mood. Autism Spectrum Disorders (ASD) is whole way of perceiving the world, which is different from the rest of us. It is not their fault...they are born that way...but they do need a lot of extra help outside of medications. There's no chemical solution for Autism Spectrum Disorders (ASD).
  17. InsaneCdn

    InsaneCdn Well-Known Member

    Correct. And sometimes medications make things worse.

    But some of us have found that medications have some impact on secondary dxes - things like anxiety or depression, when caused by other conditions not being managed well enough for the child to cope. medications aren't a long-term solution to this, either, just a bridge to help get to a better place for working on skills and such. IF the medications work.
    Last edited: Mar 23, 2013
  18. TerryJ2

    TerryJ2 Well-Known Member

    First of all, I laughed out loud when I read this: I should have snuck into the nursury and changed arm tags then.

    Second, I agree with-TeDo, Insane and Whatamess. He does have a sensory disorder, and he does need routine. And a neuropsychologist workup. Once he's on the right medications, there will be a huge difference.

    And when you hear "I hate you," maybe it's better than being slugged? That's the way I looked at it when my son said it over and over. Not that it didn't still hurt. Just that part of my brain knew that it was an improvement. :)

  19. weary

    weary New Member

    OOOh you guys are awesome. I really appreciate your advice and insight. Again, having spent time "in the field" before having kids, I'd ruled out Autism Spectrum Disorders (ASD) in my head because up until recently although he was always "shy" he did have friends and always a desire to seek them out. But interestingly now that I think about it, unless it involved a physical outdoor game he struggled. And I really see him struggling in the past year socially. And very helpful point about the mood and anxiety problems possibly being the result of the Autism Spectrum Disorders (ASD), and not the diagnosis in and of themselves. hmmm. much to consider. I have had the explosive child book sitting next to my bedside table for about six months now. I read it and have half-assed tried to implement it, but husband who is stay home dad and primary caretaker has found many excuses NOT to read it. So I guess now is a really good time to have a heart to heart about that. neuropsychologist evaluation is April 8, so will get you all the update and continue posting and reading until then.

    sincere thanks to all of you.
  20. weary

    weary New Member

    OOOh you guys are awesome. I really appreciate your advice and insight. Again, having spent time "in the field" before having kids, I'd ruled out Autism Spectrum Disorders (ASD) in my head because up until recently although he was always "shy" he did have friends and always a desire to seek them out. But interestingly now that I think about it, unless it involved a physical outdoor game he struggled. And I really see him struggling in the past year socially. And very helpful point about the mood and anxiety problems possibly being the result of the Autism Spectrum Disorders (ASD), and not the diagnosis in and of themselves. hmmm. much to consider. I have had the explosive child book sitting next to my bedside table for about six months now. I read it and have half-assed tried to implement it, but husband who is stay home dad and primary caretaker has found many excuses NOT to read it. So I guess now is a really good time to have a heart to heart about that. neuropsychologist evaluation is April 8, so will get you all the update and continue posting and reading until then.

    sincere thanks to all of you.