Discussion in 'General Parenting' started by helpangel, Apr 3, 2009.

  1. helpangel

    helpangel Active Member

    Hi everyone some of the other sites I visit have turned into ghost towns and reading some of these posts I think I have a lot in common with many of you. Think I might have found a new hangout. LOL

    Mr. 24 is doing pretty good these days working PT & attending college (psychiatric major), it's been a couple years since he knocked any holes in my walls but I figure still qualifies as a difficult child because by the time he was 4yo he was on his 4th daycare - one 26 years in daycare business and he was one of the leading factors in her decision to retire.

    Ms.14 loves animals and is very artistic - had her 1st psychiatric hospital stay when she was 6yo, in past year has been psychiatric hospital X4 and medical hospital X3 (she's had a rough year). 14 psychiatric hospital stays total so far - fingers crossed we get a couple months off this time. I'm sure that the alphabet soup I have for a diagnosis in my signature for her is a little confusing so here goes Bipolar, ODD, adHd, Hypothyroid, Asperger's & Schizoaffective Disorder - somewhere along the line they swept the PTSD & Sensory Integration Disorder (SID) under the rug or piled "bigger" diagnosis's on top and squished them (not sure which) Anyway it feels sometimes like they threw alphabet soup at the wall and diagnosis'd everything that stuck!

    Ms.12 very sweet and helpful but cries an awful lot - hasn't required inpatient yet - she's more implosive (where Ms14 is explosive) diagnosis BPnos, ADD, Central Hypotonia & Learning Disability (LD)'s (borderline CI & dyslexia)

    Anyway this is us and as a matter of survival I try to find some humor anywhere I can. I look forward to getting to know you all.
  2. Hound dog

    Hound dog Nana's are Beautiful

    Welcome to the board helpangel. :)

    Sounds like you most certainly have your hands full. Glad you found us.

    I'm wondering.......has either 14 yo difficult child or 12 yo difficult child been evaled by a neuropsychologist? If not, you might consider it considering the alphabet of dxes for 14 yogfg.

  3. Nancy

    Nancy Well-Known Member Staff Member

    Goodness you certainly have your hands full.

    Found it interesting that Mr. 24 is a psychiatric major. My difficult child wants to major in that also, as do several of her dysfunctional friends. My difficult child can't even take care of herself, how is she going to help others. easy child has a friend who is majoring in psychiatric, she is in her second abusive relationship. I'm wondering if they seek to find help for themselves so they are drawn to this field. It certainly explains the number of therapists we have gone to over the years.

    Anyway welcome.

  4. susiestar

    susiestar Roll With It

    Welcome!!! I know what you mean about sites turning into ghost towns. Just when I think I have found a site for some topic or another, I remember to check teh dates of the posts and they are often weeks to a couple of years old!!It can be rather frustrating, can't it?? I have been here for several years, and others have been here longer (and shorter) than I have. overall it is a VERY supportive and helpful group. With all that your kids have going on, I would say you will fit right in!!!

    It does sound like your kids have more than their fair share of problems. I am so sorry. It hurts to see them hurting like that, doesn't it? Yet if they manage to triumph over their problems they are so very special. Forged by fire, as it were.

    One thing you can do that will help us it to make a signature with your kids' diagnosis's like you see at the bottom of other posts. you can make one through the User CP button at the top of the page.

    Have your kids been evaluated by a neuropsychologist? It stands for neuropsychologist and they have extra training in how the brain impacts behavior. A good neuropsychologist will do 10 to 15 hours of testing over a period of several days or weeks. Then it is all analysed to see what you are dealing with. They seem to give very accurate pictures of teh true problems, as well as suggestions for interventions and accomodations. If it is at all possible many people here HIGLY recommend them. If you get a neuropsychologist who only does 5-7 hours of testing, it seems useful to find another neuropsychologist to finish getting to the heart of things. just in my opinion for that bit of "wisdom". If a neuropsychologist only does 1-3 hours of testing I would find another one to do a proper job. Again, that is my opinion only.

    How do your kids do in school? Does your 14yo get a lot of grief from the teachers because teh absences due to hospitalization? It is very tough to be that age with-o this type of problems. it seems so much harder with all of this stuff going on, doesn't it??

    I am glad you joined us, I hope we see you around a lot more.

    Happy Saturday!
  5. helpangel

    helpangel Active Member

    Thank you everyone, I already feel like I belong here :D
    I'll try to answer as many ?s as I can but try to keep this short, I understand none of us have much free time

    Mr. 24 I think got interested in psychology because lets face it he lives with a couple good "case studies", many of his professors have commented about him seeming to have some inside info when it comes to abnormal psychology stuff. Besides he's seen the frustration we've gone thru with some morons disquised as tdocs that they have assigned us to help with these girls.

    Having medicaid we didn't really get a choice about dealing with our county mental health system, and while competent the psychiatrist there is spread way too thin to treat one as severe as Ms.14; also she kept insisting there was nothing wrong with Ms.12 (said it was copycat of Ms.14) - I didn't see it that way especially when Ms12 was "cutting herself to let the pain out" and Ms14 has never cut or talked about cutting. This is just one example there are too many to list here (I've found when write a book on message board, not many have the time to read it)

    So I got the school to do as much testing as I could and took Ms12 test results to a psychiatrist & therapist outside the county system who tried to say it was ADD but reconsidered when I pulled out the graphs in school reports that showed yes attention was in borderline category but Affective Disorders & Depression is way up in the clinical range. He prescribed Seroquel & Trileptal, she was doing great but then rules changed so outside psychiatrist wasn't covered under medicaid.

    We tried a couple months with county psychiatrist for Ms12 all that she accomplished was discontinue the medications that were helping her and put her on Ritalin, Concerta & Clonodine Ugh as you guessed - downward spiral started.

    But we survived the 4 months it took to get her into see The developmental pediatrician (according to her business card also neuro psychologist) and that is who prescribes 12yo's medications currently. I'll run this by you and you decide if missing anything - her initial evaluation consisted of 4 appointments over 2 weeks (2 1/2-3 hours each) then she sent us for more testing Neurologist for EEG, MRI & sleep deprived EEG (ugh not a fun one); Occupational Therapist (OT) for evaluation (4 visits) and several more for the school to do. She normally has patients come back every 4 months for follow up but because she prescribes Ms12s medications we see her bi-monthly and do phone reports every 2 weeks.

    I was so impressed with her that I got Ms.14 in for an evaluation, same thing had me scurrying around getting tests for about a month, meanwhile ms14 (Angel) had her therapist thru the county insisting there was more to this then "just bipolar" about 5 months later dev.pediatrician doctor diagnosis Asperger's - but the county psychiatrist doesn't acknowledge that diagnosis; yet her office pays for some Autism services thru another agency. (Occupational Therapist (OT), art therapy & social skills group currently). I figure call it whatever they want just as long as we get the right medications & services and future support staff get a clue to whats going on I'm satisfied.

    I think I will go back and change my signature to include Asperger's (and maybe ODD) for Angel and all of Ms 12s diagnosis's. I always considered adHd & ODD as symptoms of BiPolar (BP) not stand alone diagnosis's - the schizoaffective disorder diagnosis I don't understand enough to argue it but I was reporting mood symptoms for months prior to the psychiatric hospital stay where they added that diagnosis a month ago.

    Hmmmm... I'm forgetting something, oh ya school. Many an IEP we've had to go find a bigger room because its more like an IEP conference then a meeting with so many bodies in that room. The county sends our therapist or case manager to IEP so they can observe and see how this is done - I go over my notes beforehand with them of what I'm asking for and what I will settle with (because I ask for things don't need, just to have something to give up to let school feel they are in charge LOL). School usually gives me what I want because I prove we need what I want or it might be they know from past that I don't mind letting an IEP turn into multiple meetings till I get what I want and they are tired LOL. It's not all academics we got hygene goals & social skill goals in there too.

    Angel is currently transitioning from a sp ed school that everyone is classified EI they say its a theraputic day treatment school (a psychiatrist & 6 tdocs on staff) but I say bull it's juvi where you get to go home at night - they educate but their whole program is about behavior. Angel was sent there in 2006 after Residential Treatment Center (RTC) psychiatrist put her medications into a tail spin so severe she had 2 psychiatric hospital stays and by the time we got the medications straightened out the home school teachers were all afraid of her. She currently attends home school 1 1/2 hours per day in a cross categorical self contained class - one of the teachers is Angel's old elementary EI teacher -the other Autism prior to this. Glad school is recognizing the need for some EI services but keeping her out of the group that is strictly EI - EI room is next one over so they have the manpower if needed.

    Ms.12 has 3 mainstream classes, resource room for math & self contained CI class for the rest of it (with pull outs for Occupational Therapist (OT), PT & SW for social skills group) currently getting speech but its being dropped at IEP this month because no longer needs it.

    I appologize I didn't mean to but I started writing a book again LOL
  6. DDD

    DDD Well-Known Member

    Just wanted to add my welcome. This is a terrific site with terrific people.
    I think you'll be glad you joined us. DDD
  7. Hound dog

    Hound dog Nana's are Beautiful

    Book smook......we don't mind. Wait til you see some of the other posts around here. I know I've written many a long post in the past and will in the future. It let's us get to know you better. :)

  8. susiestar

    susiestar Roll With It

    You call THAT a book??? Sorry, NOT making light of all you have been through and accomplished, not in ANY way. Many of us here have lots to say, so our posts can run a bit longer than on lots of other sites I have visited.

    Your neuropsychologist sounds like she is doing a GREAT job. I am glad she had you go and get the neurological tests and sensory evaluations also. THAT is really going far and above, in my opinion. One mom that was here LONG ago, and still pops in now and again, had a child with a seizure disorder misdx'd as various mental illnesses and he had serious side effects from the medications. She took a lot of time encouraging all of us to have the sleep deprived EEG and neurological workup done before we accepted any medications for ADHD.

    It was hard to get a doctor to do them for my kids, but I was so glad i pushed. My easy child was found to not have the ADHD that "suddenly" popped up in 4th grade. She has a form of epilepsy. had this other mom NOT encouraged me to have the testing done before we tried the ADHD medications, we might have had some truly awful years with her. It is something I really try to encourage other parents to have done for their kids.

    I think you have done about everything I could think of to recommend, except maybe to have a built-in break for yourself!!

    I am amazed that your county sends someone with you to the IEP meetings. We fought and fought to get ANYONE to come with us and only had ONE therapist willing to attend. So that is AWESOME!!! It really sounds like you have school educated in how to handle YOU - and that is half the battle! It is good they know you will keep pushing until you get the things that are important to you in the IEP.

    I am glad you are so on top of things. I wasn't suggesting medicaid as any wonderful thing, but as a way to keep some insurance coverage while you are unemployed.

    I TOTALLY understand being unemployed because someone has to be available for child care. I lost a couple of jobs because the demands and needs of ONE child with special needs. This was before my 3rd child was even born! After that, well, I never did return to full time work - each kid has his own needs.

    Anyway, I am so glad you joined our group!!! You seem to fit right in.
  9. helpangel

    helpangel Active Member

    It was my choice to leave my job in 2001 and become a full time mom, Angel then 6yo was in the psychiatric hospital and they said "single mom, 3 kids, works full time" and started looking for a Residential Treatment Center (RTC) placement for Angel. I did not bring this beautiful person into the world so she could grow up anywhere that I wasn't, so I quit my job. Didn't have a clue how we were going to survive but I figured as long as the family stayed together we would make it somehow and we did. Not to say that the girls both qualifying for SSI didn't help because it did. They say it takes a village to raise a child and I'm all alone with 3 of them so I learned to swallow my pride and accept any help that is offered a long time ago.

    No that wasn't a book - actually the book I'm writing is already over a thousand pages and I still got a few years to go before Ms.12 turns 18; maybe I'll turn it into a chronicles of motherhood type series. I got to do something with it because its gonna make "Gone with the Wind" look like a little comic book. I can't see many reading a book you could get a hernia picking it up. I read Gone with the Wind by the way; it took me 3 whole days (when I was 10 years old). My mom use to get "those" calls from school about me too but I wasn't acting up - it was stuff like I was reading "The Sting" in 2nd grade and counting the swear words while I was reading it.

    Childhood was kind of a frustrating experience for me because my mind was going too fast and too many directions at the same time; add to that all the sensory issues I had going on - even my mother couldn't keep up her end of a conversation with me most days. She often would get mad because she would say the bible said something and I would interrupt her with something along the lines of "actually it says..." then pull it out and show her where it said whatever. It had to have been very hard on my mom having a kid correcting her.

    I sometimes wonder if they had given me some medications so I could sleep at night, maybe I would be a rocket scientist or a brain surgeon now? Out of boredom I kind of majored in partying when in high school, still graduated with a 3.8 but believe I could have gone a lot further in life if I had taken a different path. They would have probably put me on Ritalin - don't get me wrong it helped my 24yo tremendously but for Angel it caused a downward spiral (maybe change that to upward?) anyway she turned into a little tornado on stimulants. I can relate to Angel so well because if you remove the psychosis part she's like a mini me.

    The county doesn't send therapist's to the IEP's - I invite them and they get like a little gold star in their employment folder for attending, so everyone wins. It sure gives them lots of insight into what's going on with the kids on their caseload. If you give people half a chance they will surprise you. Last year at Angel's IEP I thought I was going to have a problem out of school because I had written an information page and a couple of social skills goals for Angel. They were so thrilled with what I had written they copied the info page and its now page 3 of her IEP (wish I'de known I would have typed it LOL). They were also happy I had done the "work" of putting social skills into measurable goals and they wrote those in too.

    As far as the schools go they have been really good to work with me, I worked as an advocate 2002-2006 and several times Angel's teacher has called me to ask where to find info on a subject to try to get something for one of her students. I've thrown a couple of idea's out at IEP meetings that teacher has jumped on because it could be a break thru for another kid. Example - 1/4 inch graph paper for a kid who's writing is all over the place; it gives them boundaries for each letter and helps with spacing too.

    I guess I should save that stuff for the education 101 forum here, because I have a lot of little advocacy tricks and stories that I think many here would enjoy.