Discussion in 'General Parenting' started by lovelyboy, Dec 30, 2011.

  1. lovelyboy

    lovelyboy Member

    What an evening!!!!!
    Me and hubby realized tonight there is much more going on with kiddo than just Autism Spectrum Disorders (ASD)!!!!
    Bad meltdown.....crying, hitting, headbanging, wanting to die, wanting to get a knife to kill himself....
    Feeling he cant manage his anger...his words....telling me he isnt the person I think he is.....Looking very depressed, sad, excluded....
    Me and hubby still suspect there is TLE going normal person can change from one person into another in split seconds.....and then later say he cant remember anything....feels like a dream.....
    Please need advice, where or to whom do we you get something like a neuropsychiatrist or do we go to neurologist? Do we need to discuss with psychiatrist first or can we just go....she is stuck with Autism Spectrum Disorders (ASD) or the anxiety and Obsessive Compulsive Disorder (OCD)....
    Or are we missing the point.....all we know....he needs MORE HELP ASAP!!!!!!
    I am even thinking possible bipolar or Reactive Attachment Disorder (RAD)!?
    Thanx for listening!
  2. susiestar

    susiestar Roll With It

    It is so hard when you see them hurting so much!!!!

    She needs a psychiatrist appointment and if she doesn't have a psychiatrist then probably you will need the pediatrician/family care doctor to do a referral. At least that is what happens here in the US. I am not sure how it will work for your country. Get a neuropsychologist appointment asap. NOT neurologist at this point unless some type of epilepsy/seizure is suspected. Here neuros only test for seizures.

    You also need to find a psychologist to work with her.

    if you suspect bipolar, get a copy of The Bipolar Child by Papalous. It is an excellent book that will be an amazing resource for you. Also get your daughter set up wtih an Occupational Therapist for an evaluation for sensory problems - they can cause a lot of acting out and meltdowns (trust me, sometimes they STILL do for ME and I am in my 40's!)

    Unless you daughter was adopted and/or horribly abused before age 3, Reactive Attachment Disorder (RAD) probably is NOT the diagnosis. Reactive Attachment Disorder (RAD) is a diagnosis of exclusion, meaning EVERYTHING else must be ruled out first. She can have attachment issues, but full Reactive Attachment Disorder (RAD) is very unlikely, in my opinion.

    (((((hugs))))) to both of you and your daughter!
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Does he say he feels like he is in a dream? If so, read up on depersonalization/deralization. It's a very yukky can't tell you are real, you feel like you are in a dream. Often this happens during a rage. I can't think of a worse symptom than that, really. This link is a brief explanation.

    What are Depersonalization & Derealization?
  4. buddy

    buddy New Member

    This all sounds so familiar. I am so sorry for you. What I think, makes it hard for even the professionals to sort through is, many many kids with Autism Spectrum Disorders (ASD) do get those kinds of feelings and behaviors. I have been surrounded by groups of parents during adapted sports, social groups etc....where on the side lines we all talk and guess what I found out? LOTS of kids with Autism Spectrum Disorders (ASD) threaten suicide, grab weapons, throw major meltdowns, run away and scream and swear etc. It made me feel better in a way, BUT I, like you knew there was a difference. These fake/dream feelings... they were called depersonalization and derealization symptoms. They know they are in the real world but are dissociating in this form. Well, we tried treating him like that. I was not the only one to say that he suddenly would switch. OK, well behavioral people would say...he probably was stewing/obsessing about something before and it suddenly was just too much. NOPE didn't really fit many times either...but did sometimes.

    When our neurologist who has the son with autism took off to care for her kids (I know now it was also because her hubby a surgeon was deployed) I was forced to check out this gut instinct that it was really seizures at the main Childrens hospital which had a nationally known epilepsy program. I met people from all around the country there. Had tons of hope. Well they did a neuropsychologist evaluation while we were there since they had the time over three days. But in the end....they said no seizures...YES he did have abberant electrical activity in the area of the surgery, but not rising to the level of seizures. HMMM????? very suspicious. SO for three more years he was treated with Prozac for the anxiety/depersonalization/derealization symptoms. We now know that going off the Prozac is a GOOD thing..... he is able to restrain his actual aggression so much better this week. uggg 6+ years of prozac because they missed seizures!

    So, when his neuro came back (Sorry I have told this before but if it helps you to know what to ask for....) she said it really does sound like LEFT sided temporal lobe seizures. His injury is RT but was also global because of the high pressures for so long. While we were in patient, the head of the dept was his doctor. SHE was amazing! I bet you can even call her because after this recent time when he didn't get admitted thru the ER hospital next door, our neuro called her and she remembered Q right away and said, OH he was GREAT in the hospital....of course we would take him. So she remembered the case (she told me she would be cause it is the only time in over 30 years using those extra temporal lobe leads had paid off). SO, she is the one after one day who said, lets just add these extra leads and that is when people started jumping.... he had this extra electrical stuff that started on the rt. and moved to the left...staying only in the temporal lobes.... not always seizures but super frequent very unusual electrical activity. Proof it is seizures in my mind is that the seizure medications WORK!

    Problem with eeg studies is of course that the person has to have the seizure in their presence. IF this happens a lot then there is a high chance he will be able to have it ruled in or out. I would think anyone could add those extra leads but to find out what to specifically ask for, I can ask our neuro (we see her on the 3rd I think and I bet calling that doctor would really give you more info. She is so nice and I bet she would talk to you. She really really respects parent input. AND what the child is saying. She was adamant that Q knew his body and would not be saying that if it was not serious. She felt he deserved the chance to not have those awful feelings.

    Of course you can pm me if you want the doctor names and numbers. It is an amazing clinic and since my mom used to work for their evaluation team as a receptionist, I know they help arrange housing etc. If you do decide to do a long term evaluation like that, if you can double up to get other testing like neuropsychologist or Occupational Therapist (OT) or pt etc...(such an advantage to have him right there for a long time so they can do lots).

    There are also ambulatory eegs where they send you home on them for a day to a few days and you push a button that is attached to mark the time and journal when and why you pushed the button. I would hope adding those leads could help you sort through if it is something going on there or not. The other thing that could be helpful is a PET scan. they can see areas of brain as they are activated and how they are activated...... might not be worth it but could be.

    oh, one more thing.... I was told and have read on epilepsy sites that if the temporal lobe seizures are deep in the lobe, any eeg might miss it....then sometimes only trials of medications can help you decide...
  5. lovelyboy

    lovelyboy Member

    Thanx so so much for all your input! Buddy thanx for the advice! Again!
    Susiestar.....he was adopted at birth......he had an Occupational Therapist (OT) assessment....plenty of SI issues......also big stuff going on in speech department!
    Amazing to realize this can all be part of Autism Spectrum Disorders (ASD)!
    Shame.....he said to me he cant be cured he is just like this.....all this temper.....he is so sad about this!
    Funny that after all this its like a tsunami that has passed and the rest of the evening he was totally calm, relaxed and loving......and then said he felt bad since he woke up this morning.....was tearfull the whole day when I think back....and also wet his bed twice this week.....didnt in 2 years!
  6. buddy

    buddy New Member

    Again sounds so familiar. What age is he now? I am a little confused as to the ages from your signature, sorry....i think I am not reading it right....
    ghg8 means? Oldest old is oldest? sorry I am being lazy not looking it up and just asking you....

    Anyway, Q really started feeling bummed out while realizing he has a disability the end of 6th grade. This year in 8th grade it is really more of that than ever. He has said that he just wants to give up. Has asked for the doctor to fix him etc. I have two other friends that have said similar things about their kids.


    This book is sold on amazon too. It says aspergers but the inside says it can be used for any diagnosis that has these kinds of symptoms...really any of the Autism Spectrum Disorders (ASD) symptoms and Reactive Attachment Disorder (RAD) and social and Fetal Alcohol Syndrome (FAS) and and and.........and I actually have used sheets in it for students. The actual pages in nearly all of the cases do not say any diagnostic words it is just filled with self esteem sheets...I think on amazon you can even see pages. It helps kids figure out what works for them, what triggers them, what other people with similar issues experience etc. It is not too young not too old. My copy is long gone because I lent it to someone, bummer.
  7. InsaneCdn

    InsaneCdn Well-Known Member

    But for now... get all the help you can for the SI issues and speech challenges.
    Every issue that can be "shrunk", will reduce the anger and frustration.
    Nothing builds self esteem like success - even if the success is "relative", not absolute.
  8. lovelyboy

    lovelyboy Member

    My oldest is 8 yr old......
    I was actually thinking during the night.......the Occupational Therapist (OT) that he sees isn't experienced enough to deal with all his issues....yes she is very well quilified but not experienced enough.....I know he needs Occupational Therapist (OT), but I actually feel he needs playtherapy much more now!!!!!
    I know about a very good psychologist, he used to saw the councelor who did playtherapy with him, but she admitted to not having any knowledge of Autism Spectrum Disorders (ASD)!!!! So maybe I need to make an appointment with this psychologist and discuss all with her and hear her input......?
    I just feel worried to overlaod him with therapies and therapists....? He is starting ST for the first time this year to come......BUT he needs a way to get his feelings out in the mean time.....i can see how he is struggling....he will sit there with all the feelings on his face and body.....try to express it.....I try to give him words.....then he just give up and say he doesnt know and this must be the way it is.....He needs to draw, music, what ever to help him express his feelings and worries!!!????YES and positive experiences!!!!!To build his self esteem!
    Thanx Buddy for the reference to the book, I am going to look into it just now!
    Agh....I feel so bad because a big part of the meltdown was because we said he is not going to the skate park today because the rule is if he hurt one of us he looses this event.....but I could see he really didnt have control over what went on.....he also told me he lost his brain and couldnt remember anything! But we also need to stick to the rules!
    Think hubby can take him to a movie maybe.....
  9. buddy

    buddy New Member

    There are some really good posters that have facial expressions with feeling words... some made into magnets so they can learn to put a frame magnet around the one that matches their feeling. there are also cd's that help teach feeling words for kids iwth Autism Spectrum Disorders (ASD) and others that teach social situations, choices.... I will go thru my cd's and let you know if I find any that I own that might relate. Even better I will find my educational catalog links and post them so you can sort thru different sites that sell social skill (including feeling words etc.) types of things. for many Autism Spectrum Disorders (ASD) kids, reading those cues is just very hard. they need direct teaching for what feeling words to use, and how they relate to their thinking bubbles etc. It can often be best taught visually. Now that Q is using the zones... each zone has feelings associated to is all in his personal book with pics of HIS face to go with it... also pictures of HIM doing the relaxing things or activities that go in each zone... He, first thing every single day, goes to his check-in board and puts a marker on which zone he is in. A couple of weeks ago he put it on Yellow and his teacher asked why?? He said, not in a bad way.. it is because he is so excited to go to his aunts house after school so it is not just plain green, normal feelings. Pretty amazing how they can really use a tool when it matches their learning style.
  10. InsaneCdn

    InsaneCdn Well-Known Member

    We tripped over this one a LOT... until we woke up and re-wrote the rules.
    Please keep in mind, though, that my difficult child is NOT officially Autism Spectrum Disorders (ASD) or Aspergers - but does have"some traits".
    Much of this may not be a direct fit - but may give you something to think about... adapt, try, etc.

    Some rule-making suggestions...
    1) Do not use the absolute most favorite activity as an "earned" privelege. Too often, it is a complex situation, and losing the favorite activity on top of having problems putting it all together... often leads to melt-downs.

    2) Consequences make more sense in the context of direct choice. If the child really isn't in control of the behavior, they didn't "choose" to do what was done, so the didn't "choose" the consequence either. Direct choice: change to your play clothes before going to the sandbox... if he does, the reward is to go to the sandbox... if he doesn't, he chose not to go. You will STILL get rages initially, but they can catch on to the concept.

    3) Consequences should be immediate and directly connected to the behavior. (We blew this one all the time!) You hit your sister this morning, you don't get to go to the skate park this afternoon? Too far apart, and not connected. You break a drinking glass due to carelessness, and you'll have to use plastic - logical link: if you can't be safe with glass, you have to use plastic. You break your pencil, and you can't write with it. Break 3 pencils in a week, and you don't get any more until next week - there are only so many pencils available. So... maybe, hit your sister and she won't read you a story - not necessarily immediate (which would be better), but directly connected to how relationships work.

    4) Watch out for "punishments". They don't really work. Consequences are logical, punishments are not. Too often when we say "there has to be consequences", we really mean "there has to be punishment". Stop and think about what you are trying to achieve.

    *1 - Absolute favorite activities are for relationship building. Its an advantage if they are interactive in some way - going to a movie isn't interactive, but watching a sports event can be, etc. We've learned that the only reason to delay (not cancel) one of these, is due to immediate safety. Its time to leave for the event and difficult child is not under control? Not safe to go - we'll have to do that tomorrow instead. Building empathy, feeling, cooperation... all depends on building relationships. There should be a range of "just because we are a family" activities that are reserved for relationship building. If sis is a really good foot-massager and a good book-reader, one activity may be subject to how she's treated, but the other she will do "just because", even if its been a bad day.

    They say to not treat our kids like animals... but I wish I had known more about positive dog training before I had kids. Some of the secrets to dog training? No punishment - refusing to take dog for regular walk because dog did his business on the carpet... just confuses the dog. Reward or correction must be immediate - as in, you have half a second to get the approval message through. Reward must match the level of difficulty of the task. Don't ask for what the trainee cannot deliver. We choose the behavior we want to re-inforce, but the trainee chooses what "reinforcers" are... which means, the trainee may be getting some advantage we don't see, if the behavior shaping isn't working. (example: It doesn't work to tell a dog who's barking to get attention, to "shut up"... he just got attention, so barking works!) Never end the day mad - always make up and tuck in on good terms, tomorrow is another day. Don't take it personal. Look for the real message. (is he whining to annoy me? or because he has a need and I'm not getting the message?)
  11. TeDo

    TeDo Guest

    Great ideas Insane. That is exactly what I had to do. Even if the kids aren't Autism Spectrum Disorders (ASD), they are logical anyways.
  12. lovelyboy

    lovelyboy Member

    When I think about Friday again.....I spoke to kiddo about this and he fully agrees!!!! During Thursday and Friday, this older friend was tickling my son alot....but to such an extend that my son almost went into a trans.....this happened when I wasnt at home, when I got home I could hear my son laughing histerickly and when he saw me said mom mom please help! My son has an amazing laugh and other kids thinks he enjoys it....and he does, to a point, then it gets to much for him, but he doesnt know how to stop the situation! I was just wondering if this couldnt have bring all this meltdowns on? Will speak to older friend and explain not to tickle like this and when kiddo says stop......