A very long vent from a sort of a newbie

Raining

New Member
This post will be extremely long so please bear with me.

Signed up for this site 3 years ago, posted a couple of times, got into a huge mental funk over difficult child and what she was doing and stopped going online at all. Which in retrospect, is when I should have been on here more.

We have been all over the map with medications, moods, and diagnosis'. For awhile she stole from everyone. Me, teachers, friends, my mother, stores, etc. Nothing would stop her. Plus her rages went on and on. Couldn't even tell her to get up for school when she was 10 years old without it being WW1. She repeated 4th grade and almost failed this past year (5th). She is technically supposed to be in 7th but is now going to going into 6th grade. Her 5th grade teacher was a first year teacher so he was naturally gun-ho about trying to change her and set his sights on making her an honor roll student again but by the last semester he also gave up (to a point) and just started sending her to the vice principal for her to handle my difficult child.

She has the mentality of probably a 4th to 5th grader when she should have one at about a 7th or 8th. She has gone around for years not caring about anything other than herself and what SHE wants to do. If she isn't interested, she won't do it. Her personal hygiene is horrible. Kids will call her stinky and she will get upset but won't learn from it and take better care of herself. It is a constant battle with us with me telling her she skipped her shower today and needs to take one today. Then will argue that she did take one. Back and forth it will go every day. Brushing her teeth would not happen either if I didn't tell her to go brush. She sees it as, if it isn't bothering her, why should she do anything? Her sense of reality is nonexistant and the more I try to make her learn and see, the more deaf and blind she is. DEX doesn't help by doing things for her all the time and is fun dad every other weekend. She is for the most part a wonderful, smart, and funny kid. That is until you give her even the smallest of responsibility or a small task she doesn't feel she shouldn't do or won't want to do and then we are off on her being argumentative(sp), lying, giving excuses, playing around, or doing a half a** job of it. She looks at school as something she is forced to do and is "serving her time". She is up front and honest about her not caring about anything unless she gets something from it. She is unemotional when she hurts most peoples feelings. She will be over dramatic when she feel she is supposed to be showing that emotion when she really isn't, to be a part of what is going on. She is the kid who will constantly touch the hot stove over and over. Never learning, never caring. She is socially inept from me having to "ground" her from going outside to play with friends because of her many acts of defiance and from her ways of having social ackwardness around other people. She is a follower of the older kids and a bully to the younger ones. She has expressed her deep "hatred" towards babies and is horrified to learn that husband and I are trying to have one. We are honestly scared to have her around the baby when it is born.

She is been to all of the after school programs from the mental health center and is on her 4th therapist. 1st one moved, second one said he didnt know what to do for her and referred her to her currant one who has now has also said she needs to go through more testing and to go to a different person because she is stumped. difficult child also had an in home therapist who after a year and a half of seeing her almost every day threw her hands up as well. Recently I tried to admit her to a residental treatment center to have them take her off all her medications and moniter and test her to get to the bottom of all of these diagnosis and possible problems she has or may have, but since she (at the time) wasn't a harm to herself or to others, they wouldn't take her. She is hovering on that fine line of being "horrible" but not enough to get in a hospital with extensive testing and treatment.

She is on a vegan diet (no meat, dairy, or eggs) as a personal preference (animal rights) but she does consume casien (found in veggie cheese) and egg whites (found in some fake meats) on occassion. I have found out recently that a gluten and casien free diet may help her so I will probably pursue that avenue shortly. She does recieve all of the nutrients she needs through the foods I make her and I always make sure she gets a certain amount of all of the essential things as protien, calcuim, all of the Bs, Cs, and D vitamins and the omegas.

She has been on a car full of different medications. So many that I cannot remember them all. I always try to keep the medications she is on at a minimum if possible. I will only increase or change if I feel it will help. But as her body and horomones are changing, so do the medications to accomodate.

I am at the point now to throw up my hands but I can't. But I feel I have done everything I can think of and more. Nothing I do or don't do has not worked. My patient husband has only been with us for a year and he walked in thinking (to some extent) that he could fix her but is now at a loss as well. I had my hopes up slightly because a fresh mind has come into our lives and may shed light on something I have not seen, but he too doesn't know what to do, so we pour through the computer for hours trying to figure out something. The only thing that I have found that I have not done is the gluten and casien free diet. Who knows, this may be the thing that does it?

With my own personal struggles with depression and anxiety, I'm sure I am lacking something she needs. And I know for a fact that I have emotionally stepped away from her because all of the hurt, confusion, and frustration I have with her. It is very hard to show love to a person who shows you no respect for me, herself, and others. I hate myself for not being able to give her a big smile when she comes home from school or from DEX because I don't know what will be coming through that door. Will it be a war today or will it be ok? I hate knowing that I may possibly have conditional love with her. I hate knowing that I have to work at loving my child unconditionally when you would think it would come naturaly to a mother.

I try. I try everyday. I am drained. I am confused. I am hurt. I hate myself for failing my daughter. And I don't know what to do anymore......
 

smallworld

Moderator
Raining, welcome back.

Sorry for all the questions, but your answers will help us point you in the right direction:
What kind of doctor diagnosed her? How long has it been since she's been evaluated? What kind of doctor is prescribing her medications?
How long has she been on Prozac? Is she better, worse or about the same?
Does she have an IEP? Is she getting any school-based interventions?
What makes you think she has Aspergers? Can she be evaluated for it?

Again, welcome back.
 

Raining

New Member
Mental health center tested her at 7 yo as ADHD. Down the road at 9 yo, another dr (cant remember what kind but most of what he did for a living was mental health testing) found the ODD. Her Psychiatrist didnt "test" her per say, but he knew the obvious signs of her Obsessive Compulsive Disorder (OCD) and prescribed her prozac for that. Obsessive Compulsive Disorder (OCD) gone. Been on it for about 2 years.

I dont know what IEP is.

School tested her for any learning disability. She has none and actually scored pretty high but that was because she liked the full personal one on one attention she got and put 110% into it. Reg school days her percentage on what she puts out varys. Hence the school frustration. When she wants to, she does excellent.

Her psychologist highly suspects aspergers from numerous symptoms and the research I have done online shows that there is a big possibility she is right. She has told me the center doesn't test for that and I will have to find someone who does test for aspergers on my own. Lots of phone calls to make.

She is starting middle school this year and I'm scared out of my mind. 5 to 7 different teachers and classes. So many things to remember that she wont care about. How much do I step in? How much do I let go? In the past stepping in too much made her think she didnt have to do anything and mom will do it and remember it all. But not doing anything lets everything go haywire and next thing I know, she is failing, ticking off teachers and classmates and getting in school suspension.
 

smallworld

Moderator
An IEP is an Individual Education Plan, which would hold the school accountable for addressing your difficult child's educational needs (and if she is almost failing, she certainly has eductaional needs). If your difficult child has suspected Aspergers, you need to know for sure because that diagnosis would qualify her for both accommodations and school-based interventions under an IEP. In your shoes, I would certainly make assessing her for Aspergers my top priority, particularly because she's heading for middle school, where the academic demands make it much harder for kids with disorders to cope.

Is she still raging, or do you consider her stable on her current medication mix?
 

Raining

New Member
Aspergers testing is #1 on my list. My own depression is making it take longer to get going. Just feeling very overwhelmed. I have a lot of other things in my life going on on top of difficult children stuff. But I plan on this weekend looking online for places and/or docs to test her and start making the phone calls Monday.

Her rages aren't as bad as they were 3 years ago. She still has her moments but forunately it's pretty much gone. Now it's the whole I don't care attitude, poor concentration and disorganization that is a prominate thing.

How do I go about getting her an IEP? Do I go through the main administrative school or just ask someone in the school office? School registration is Aug 3rd. Do I ask them then?
 

BusynMember

Well-Known Member
I'll let the others give school advice. I'm wondering if the Aspergers diagnosis. was ever pursued and, if so, is she getting any interventions? She sounds like she could very well have Aspergers or be somewhere on the spectrum. My son is on it and he could care less about hygiene or if he smells--these kids have no understanding of social rules and frankly often don't care about them. Especially with Aspergers, the kids often display an alleged lack of empathy partly because they have no idea how to express it and partly because they have so much trouble relating to other people. Has your child, rather than being in therapy, ever been evaulated by a neuropsychologist? ADHD is often the first diagnosis. for a spectrum kid. Often they are VERY smart, but don't do well in school--some are brilliant and do GREAT in school, but they all face "life skill" deficits that MUST be taught for them to reach their maximum potential. medications can help behavior, however they won't help the autistic thinking. I'm going to post a few links you may want to look at. I don't know if your child is on the spectrum, but, from what I've seen, she sure has a lot of symptoms. This is a neurological disorder, not a psychiatric problem. These kids desperately need interventions. My son is doing much better--he has had interventions since before he was two. It is VERY common for psychiatrists and therapists to miss Autism Spectrum Disorders (ASD) and we beat our heads against the wall treating "psychiatric" problems when it's really neurological Ok, here ya go:

http://www.aspergersyndrome.org/

here is an online test. A "mild" Pervasive Developmental Disorder (PDD) would indicate Aspergers:
http://www.childbrain.com/pddassess.html
 

Hound dog

Nana's are Beautiful
Welcome Back :grin:

I agree with smallworld about the IEP. She needs one badly.

If you're suspecting autistic spectrum then I'd have her evaluated by a neuropsychologist. It's a really involved evaluation that can pick up on alot of things often passed over by other evaluations. You can often find them associated with Children's Hospitals or get a referral for one.

I hate to say it, but puberty is probably going to make things worse for while. The teen years with difficult children are rough at best. You're going to need all the help you can get.

Hugs
 

smallworld

Moderator
You might want to post on the Special Education 101 board about obtaining an IEP. The moderators Martie and Sheila are very knowledgeable and will help you out.
 

Raining

New Member
Sounds like I need to find a neuropsychologist. I'll also check the main site for the city schools about the IEP and find out where to start. If I have problems I'll post on SE101 board. Thank you so much guys for helping me. I appreciate it and it makes me feel better that I am not the only one out there even though my intellect knew.

The more posts I read the more I'm nodding my head and yelling out "Omg! I went though that!" or "Omg! My daughter does that too!" lol

Gee... I think I might see some sort of light behind all of this...
 

BusynMember

Well-Known Member
I can't believe I forgot to mention that a neuropsychologist evaluation is very intensive and picks up stuff other professionals miss. If she's on the Spectrum, an IEP needs to include things like social skills, life skills, and often other accomodations. My son is in Special Education for one of his periods, and, if he smells bad, his teacher will make him take a shower!!!! That has made such an impression on him that he is cleaner now, although I'm not sure he'll ever "get" that good hygiene is important...lol. He isn't in spec. ed because he has a low iQ--his IQ is average. He's there to learn the simple things that most kids pick up in life (like brushing teeth and how to have a give-and-take conversation). I can't tell you how much it has helped him socially. He is well liked at school, although he prefers being alone when he's home (I think he can't handle too much socializing--it overstimulates him). Even bright Spectrum kids often need some help in getting work completed. It's a whole different ballgame from a psychiatric disorder. I hope you find out what's wrong. I am not saying she's on the Spectrum, but counseling hasn't worked so far and she seems "quirky", much like an Aspie. I would definitely want to see a neuropsychologist who is best able to rule it in or out. In the meantime, he can pick up other problem areas, even if she isn't on the Spectrum. Take care!
 

smallworld

Moderator
The IEP process generally starts with a letter sent CERTIFIED MAIL (because that triggers a federally mandated timeline) requesting an evaluation for the purposes of an IEP.
 

Raining

New Member
Midwestmom, I fully believe that she has aspergers because of what I have read about it. But I also believe she has other co-morbid problems.

My mom kept asking me about Special Education classes/school and I'm like "Mom, her IQ is not low she doesnt need Special Education" But if what you are saying is what they will do for her that would be great! Then it wouldnt be about -you are here because you arent smart-

Whew! a lot to process!
 

Raining

New Member
smallworld,

Ok I guess I will need to post in the other board about the IEP thing. I figured it would be like a few forms to fill out, a test for difficult child to take and badaboom! lol
 
F

flutterbee

Guest
You may want to start with your local MR/daughter center to see if they can help you with evaluations or point you in the right direction. Also check your state website (or google something like mystate: autism). Ohio has an agency for autism; Indiana might, too. That might be another good place to start.
 

Raining

New Member
Thank you wyntergrace (by the way love your quote lol)

Im going to go do some research tomorrow. Brain is overloaded right now. Heading to bed to zone out on mind numbing reality TV I had DVR'ed today.
 
K

Kjs

Guest
Get an IEP. Check in the special education forum for great advice. My difficult child is very bright, high IQ, skipped a grade, but his behavior has taken it's toll on his grades with defiance to do the work.
Because of his behavior and outburts and defiance his first year of middle school was awful.
We had our first IEP at semester of 6th grade. Have had several since. difficult child is in regular classroom, with the accomodations he needs to do his best. (if he chooses too). We went through many IEP's and I had to do a lot of research to learn what rights I/difficult child have. After a lot of research I do feel we have a great IEP in place for next year. (IEP was completed the last week of school)
Just an example of what we have in place:
difficult child has the opportunity to leave the class, go to a "cool off" place specified on the IEP where he has the opportunity to talk to the Special Education. teacher, or social worker. So, if he feels as if he is going to have an outburst he can leave before he blows up.
He see's the social worker 1 or 2 times a week. Works with the Special Education. teacher daily on getting assignments completed or atleast together to take home.
Many more interventions listed which the school will have to follow. Even though it took 3 IEP meetings prior to the last one, (I was not informed or prepared) difficult child has spent much less time in ISS and was NOT suspended out of school at all last year.
My difficult child hates school and probably see's it the same as your child.
Has few friends, they come and go depending on him I guess.
I would definately suggest getting information on IEP. Could make the whole school experience a much likable event.
 
K

Kjs

Guest
We just spoke to the school counselor. Requested the school psychologist to do testing. Asked for a FBA (functional behavior assessment). Even before difficult child had the bipolar not otherwise specified, diagnosis..his behavior and ODD was enough to get the IEP going. My difficult child also has the "I don't care attitude". This attitude comes and goes throughout the school year. I also meet with each of his teachers/counselors/social worker/vice principal prior to the school year. First I requested the meeting, now they suggest I do so prior to each new year. difficult child will be in 8th grade this year. He started middle school at age 10. The young age definately caught him in the maturity issue. In my case I did not need to go with the certified letter, they approached me regarding special education. Even though he is very bright, he processes the information differently than others. Making each day/class/lesson a challenge. His mouth, defiance are his biggest enemies. He had no problem telling the teachers/staff where to go. Hope you get the support you are looking for and you need.
 

BusynMember

Well-Known Member
It isn't about intelligence! People on the Spectrum ALL are socially clueless and, to some extent, clueless about "life skills." Their thinking is different. They don't know how to "break the code" of people. I don't know where my son would be without the help he's gotten, and he's STILL quirky with problems, but he's MUCH more "normal." And he's happier, which has made his behavior a lot better too. I highly recommend getting the label, so she can get the interventions. medications may help the co-morbids, but they won't help the Aspergers. On the plus side, Aspergers kids are bright and can learn social skills and life skills. They may not CARE about them once they learn the rules, because they don't think that "normal" social rules are important, but at least they know how they are "supposed to" behave. KIds on the Spectrum are very confused and frustrated and very prone to depression because they are expected to do so much (due to being bright) and they just don't "get it." Behavioral/psychiatric interventions/therapy does NOT reach these kids. They need a different, almost text book approach, to learning life and social skills. Often they have Learning Disability (LD) problems too. I'd get the neuropsychologist evaluation. An IEP which just addresses "bad behavior" is probably not appropriate if she's on the Spectrum. These kids are not defiant because they are making bad choices. They can be defiant because truly the world doesn't "get" them and they get frustrated beyond belief. Once they are being understood, and undertand things themselves, they usually REALLY improve their behavior (co-morbids can get in the way though). in my opinion, I'd hold off an IEP until she's re-evaluated because you aren't suer w hat she needs yet. I'd hate to see her stuck in an ED class when her problem isn't emotional disturbance. But it's up to you. in my opinion SD diagnosing isn't very good. I'd see a private neuropsychologist. Whatever you decide to do, I wish you lots of luck.
 

nvts

Active Member
You know, I think one of the most disturbing things that I've learned about our difficult child & our situations, is that we are CONSTANTLY reinventing the wheel. I feel so bad for you that you're going through all of this and not one person in the schools ever mentioned to you that you not only need an IEP but a neuropsyche evaluation would open up so much info. for you. No wonder we're all going crazy from all of this! (Sorry for getting on the soap box :eek:)

We're right now going through the process of neuropsychs for all 3 of the kids. It's truly intensive, but eye opening to say the least.

Keep your chin up - you've tapped into the most knowledgable group of people on this subject that I've ever had the pleasure of dealing with!

Beth
 
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