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Discussion in 'General Parenting' started by steffybluebird, Jul 28, 2007.

  1. steffybluebird

    steffybluebird New Member

    Hello to all the other frustrated parents. I am a single mom with an 7 yr old who has run the gammit to find out what is causing his behavior issues. I have an IEP, he has seen a psychologist, psychiatrist, Licensed Clinical Social Worker (LCSW), neurologist, and a regular psychician. So far all we have are guesses. First the school tried to say that he had aspergers. The psychologist says it is not that nor is it ADD. He was VERY emphatic that we not allow them to put him on ADD medications. He says is overanxious disorder of childhood, mixed emotional disturbance, mood disorder not otherwise specified,and learning disorder not otherwise specified. The Licensed Clinical Social Worker (LCSW) thought it was bipolar and not much help otherwise, and the Psychiatrist put him on anti anxiety, which helped with the violent outbursts and anxiety, but now he is stealing and he pooped and peed on the carpet the other night. The psychiatrist is now recommending a mood stabilizer, but I am tapped out financially and its alot of money. I am REALLY frustrated as all I have are maybe's. The other thing is he has been kicked out of 2 daycares and is on the verge of getting kicked out of a 3rd. Not to mention my family is getting tired of dealing with him. I have read every single book out there on every mood disorder: bipolar, aspergers, add, adhd, sensory issues, you name it.

    Please any one have any idea what I can do?
     
  2. nvts

    nvts Active Member

    Hi! Welcome! There will be a lot more experienced people along! Everyone on here recommended that we go and get a neuropsychologist evaluation. The neuropsychiatrist will test every way from Sunday and will give you a more definative attempt at a diagnosis. If you don't have insurance, most do this on a sliding scale OR you could call medicaid and see if there's any way you could qualify for coverage.

    There's usually a long waiting list for these (took us 2 mos. to get appts.)

    Does he have an Individual Education Plan (IEP?). That would help out in a school situation as well.

    Like I said, more people will be along soon (my difficult child's are driving me nuts so I've got to go!!!)...

    Beth
     
  3. smallworld

    smallworld Moderator

    Welcome!

    You're looking for a neuropsychologist, not a neuropsychiatrist. I live in a Maryland suburb of Washington, Difficult Child, so we may be neighbors. PM me if you want info on local resources.
     
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I agree with seeing a neuropsychologist. They do very intensive testing. Other professionals tend to listen to your symptoms, maybe observe for one hour, and pull a diagnosis. out of a hat (been there done that). NeuroPsychs test for weaknesses, strengths, and personality traits and can catch things other professionals miss. Also, look at the child's biological family background for big clues. Most of these disorders are inherited. Good luck!
     
  5. steffybluebird

    steffybluebird New Member

    Hello ,

    Yes I do have an IEP, but they try to force my hand at times. That is why I went to all the specialists to beat them to the punch. I didnt want my son labeled with that and the school can be biased at times.

    Thanks for the suggestion and I will look into that.

    Steph
     
  6. Liahona

    Liahona Active Member

    Something else others have done is a multidisciplainary (sp?) evaluation. Where a bunch of doctors get together to evaluation at the same time. Someone else here will have to say how to get started on that because thats not the route we've gone, but others here have do it.

    Also, look into medicaid for insurance. It might help, and wouldn't hurt to look.
     
  7. steffybluebird

    steffybluebird New Member

    i have done the multidisplinary evaluation. That was the first thing I had done. I have tried just about everything and everyone has a different opinion.
    Sigh
     
  8. blb

    blb New Member

    Steffy,

    Welcome to the board. Sorry you have to be here.

    Where did you get his first evaluation? Was it through the school? Did the school pay for it? I find it surprising that if it was a multi-evaluation, that the psychologist diagnosed your son instead of the psychiatrist. Since a psychologist can't prescribe medications, he really can only help with the behavior mod portion of a treatment plan, and in my opinion isn't really in a position to tell you not to try different medications, since he doesn't prescribe them in the first place. Usually when a multi-evaluation is done, they (all the players- but first and foremost the psychiatrist) come up with a diagnosis, and a treatment plan together. Can you tell us more about what was done, when and where?

    Have you looked at the link for the multi-evaluation that includes doing a parent report click here It includes listing a family history, since for many of these disorders, family history is huge to the bigger picture.

    You mention you're a single mom. Was your son's father troubled also?

    I see you are in Northern Va, there are quite a few decent children's hospital's in the area. Perhaps some others from the area will see your post and offer their experience re evaluations around your neck of the woods.

    My advice I think would be to start over, at the best children's hospital you could find that includes an Occupational Therapist (OT), PT, and audiological evaluation, with neuropsychological testing (for any learning disabilities), plus the CSW and psychiatrist evaluation. Everything short of the kitchen sink, if you get my drift.

    Again, welcome.
     
  9. steffybluebird

    steffybluebird New Member

    I am working up the history right now. Basically the school tried to say he has aspergers the second day of school. I fought and fought with them and refused to let them do the testing. I went to a child developement center, (with psychologist, RN, and number of other specialists) They gave me some diagnosis, but no actual true diag. They recommended that I have him evaluated by a psychiatrist, neurologist, and Licensed Clinical Social Worker (LCSW). All I have paid out of pocket. They even did a sleep deprived EEG. The initial testing by the developement center was an all day thing. I had tons of testing and we know he is at a 3rd grade reading level and High IQ. (that was the only testing done through the school. I am looking into the neuropsychologist, but I about passed out when I found out the cost. I am trying to work out how to pay for it. But if I get an actual diagnosis, I will be happy.

    His father did have issues in school, but apparently not to this degree. I have an uncle with mental illness, but no one actually talks to him, (nor have they in Years) so I am not sure what it is. I will load the full history of all his testing later.

    Stephanee
     
  10. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Hello and welcome-glad you found us-you will find much support here. Hugs.
     
  11. busywend

    busywend Well-Known Member Staff Member

    Do you not have medical insurance? Why does this cost you so much? No prescription plan? I am not being mean, just curious. Can he get on some sort of state funding insurance? There has to be ways to get help with the costs.
     
  12. busywend

    busywend Well-Known Member Staff Member

    Oh, call your local NIMH to see if they have any resources that can be helpful with the costs.
     
  13. smallworld

    smallworld Moderator

    Busywend, do you mean NAMI, the National Alliance on Mental Illness? NIMH is the National Institute of Mental Health in Bethesda, MD.
     
  14. blb

    blb New Member

    I guess the one question that I forgot to ask before is why did you fight the school district when they wanted to do the testing? How did they come to believe that your son had Aspergers?
     
  15. lori t

    lori t New Member

    i just wanted to tell you that although, i cant really give you advice being due to the fact that im going through it as well and now my 3 yr old is mimicking his brothers behavior. but i am on medicaid and it helps alot with the medical bills and prescriptions. you should try to go about applying for it.
    find your local dept. of human services and they can help you get started
     
  16. Marguerite

    Marguerite Active Member

    Whatever diagnosis you end up with, be aware that it STILL is not certainty. However, a label, ANY label, will help you/the school access services. That could by why the school was fighting to give him a label. Although if you have an IEP in place, you're part-way there in terms of giving him some support.

    At some level you have already worked out what you're dealing with. It doesn't have a name but it has certain characteristics which at some level you are dealing with and can almost predict at times. This is vital information which can assist towards a more accurate diagnosis from health professionals.

    I was talking to a parent outside difficult child 3's drama class last night, whose son has never had any problems accessing services because he has clearly identified needs. She seemed surprised that anyone would bother looking for a psychometric assessment, for example, outside the education system. She had no idea of the problems many of us other parents face, when our child cannot be so readily pigeonholed. As she said, "everything has been handed to us on a plate."

    She was horrified when I described how difficult child 1 had been assessed at school and basically 'failed' his first IQ test, because he could not sit still and did not understand why he was being tested. He failed to finish the test, but the rules say the test has to be scored as if completed. The tester (who was the school counsellor) should have known that this compromised the test but used difficult child 1's low score to attack ME for difficult child 1's obvious inexplicable ability in a number of subjects - I was clearly pushing him to achieve above his level of ability (which, by the way, is not possible to do).

    Somoe school districts are wonderful in how they will test a child and support parents of a difficult child. Others have a political agenda. But from my experience (and bear in mind, I'm in Australia) ALL school districts are limited in the scope of testing they can do - all they can test is general overview of ability, not the deeper intricacies of learning difficulties. They actually will average out even really huge sub-score discrepancies, rather than recognise that a verbal performance score of 18, mixed with a coding score of 6, indicates something really interfering with that child's prodigious ability. So when the give an averaged-out IQ score of 110 and say, "That's above average, you should be happy with that. And your child is passing the subject - just - which is within the expectations at that IQ score."
    Meanwhile you have a child who clearly should be capable of more but has problems in personal organisation, in transferring information from one point to another (could be caused by any of a number of problems including vision, memory (short-term or long-term), hearing, fine motor skills, other more complex aspects ALL of which need to be assessed for more careful and accurate identification) and needs to be studied more.

    Basically, the school has unknowingly identified a child who is gifted but learning disabled, but by averaging out the scores has negated their requirement to attend to BOTH needs. The student is frustrated, bored, distracted and eventually, very angry. But doesn't know why. Teachers 'dumb down' their teaching to that student (clearly not as smart as they thought, the IQ test confirms that they're not that bright) and the problems escalate instead of improve.

    BUT - there is good news. You can use a school's assessment results to speed up the private process, as well as reduce the costs. You get the school results, including the sub-score results, sent to the private expert of your choice (for us it has to be a clinical psychologist or psychiatrist - I don't think we have neurospychiatrists in Australia) and they will look at the sub-scores and know which ones to assess in more detail, further.

    This is what we did with difficult child 1. Of course, we were not permitted to carry a copy of the results ourselves - parents are not permitted access to the subscores from the school (or weren't back then) but they posted a copy to the bloke we chose. He tut-tutted, gave difficult child 1 more tests and also sent us to an optometrist who specialises in kids with learning problems. He identified a vision problem, correctable with glasses, which was adding to the information transfer issues.

    The biggest problem we faced - difficult child 1 was sixteen at this stage and trying to assess him was difficult as he had adapted to his condition, he was able to mask it very well. Not well enough to do OK in school, but well enough to 'get by'. He uses his long-term memory to compensate for his faulty short-term memory, so he has to be tested meticulously. This was not done, but I was observing and could see what went wrong with the testing procedure.

    So now, although on paper difficult child 1 has no memory problems, WE know and compensate for it so he can continue to develop his management strategies.

    easy child 2/difficult child 2 has been assessed as NOT having Asperger's, but only having mid inattentive-type ADD. WE know it's much more, WE can see the Asperger's, but her pediatrician cannot ("because she makes good eye contact" - yeah, with HIM - she knows him). We could push the point, get her independently assessed, but she's 20 now, almost 21. What difference will it make to her NOW? She's already getting disability support as much as she needs. SHE knows how to adapt, and now that we understand a bit better we have changed how we deal with her and we g et along much better.

    So there is a difference between what the professionals can tell you, and what you personally believe and how you cope. Use the professional labels/support to get the practical help you need to meet what YOU understand the problems to be. Be aware that you may need to up the ante at some stage in the future, which is why we try to get as accurate a label as possible, as young as possible - the older they are, the harder to get an accurate diagnosis.

    Never worry about your child "being labelled". If there is no legitimate reason for what the schools (and others) observe, then your child is going to be labelled anyway - as a difficult, problem kid, with no valid reason to be so (since there is no diagnosis to justify it). The label is going to happen if your child is not prefect. it's just a matter of parental choice, WHICH sort of label it's going to be - medical problem? Or social problem?

    Marg
     
  17. steffybluebird

    steffybluebird New Member

    I do have insurance but almost all the places I have gone to dont take insurance. My PPO will reimburse me but only after I meet the deductible. I have done that now, but The nueropsychologist is the same. They want $2500 for all the tests and being a single mom, that is next to impossible. I am going to be looking for grants to see if I can ofset the cost. Also I have included a summary of what I have gone through and all the tests so far.

    Summary

    DOB: 04/22/00 born 6lbs 12 oz @ 36 weeks.
    -Was hospitalized at 18 month due to dehydration from Rotavirus
    -Tonsillectomy and anoidectomy performed 05/10/06
    -Hearing and speech problems when younger due to allergies that caused tonsils and anoids to swell cutting off Eustachian tubes, leaving fluid in ears.
    - After surgery hearing and speech improved dramatically.
    - Home schooled in NV for Kindergarten
    - History of running
    - Never liked homework, even when home schooled
    - When we moved to VA, he was obsessed with Super Mario Bros. And would act out scenes and draw characters from the game.
    - Aggression and violent behavior started approx a month into the school year. Kicking, screaming, hitting and throwing things.
    - Was in ISS twice and once for regular suspension.
    - Kaden came up 2 weeks prior to Mom coming to VA to start school at the appropriate time and to shorten the travel time for him.

    Time Line
    08/23/06- First Day of school
    08/24/06- Letter received from principal re: Non-authorized observation. He was observed from 9:27am -9:50am. Principal concluded after 30 minutes that he had asperger’s.
    09/07/06- Parent/Teacher conference: Re- K running, screaming, playing and talking to himself. Initial testing, he was reading at a 3rd grade level, Math is normal but will not work individually, writing is behind and hard to read, excellent computer skills. Initial hearing and vision testing performed and passed within normal limits. K didn’t respect personal space and would chew up pencils, erasers, paper and tear up notebooks. Would speak and act loudly, especially when on the computer. He loses focus easily, babbles incoherently and has poor peer interaction/relationships. School requests observation by school psychologist. Counselor (school) to set up sessions to get K introduced to other new students. K has frequent bathroom visits.
    09/13/06- Communication notebook started.
    09/26/06- Started hitting the teacher.
    09/29/06- Refused to take accelerated reader test.
    10/04/06- Difficulty with transition at school.
    10/09/06- Removed from class due to bad behavior.
    10/10/06- K was defiant, screamed, kicked and hit the teacher.
    10/17/06- Parent/ Teacher conference: K needs constant one on one attention, attempts to run away frequently, they have to have an adult on supervision all day. Per the school, he is unable to write a complete sentence, does not initial conversation with students or teachers, takes things without asking, screams when he doesn’t get his way, compulsive behavior, calms down when asked to draw. School wants to assess certain components educational, socioculteral, observation, vision, hearing, and psychological. School suggests he may be developmentally delayed.
    10/23/06-Hit teacher and another student, tried to run away several times.
    10/24/06- Hit teacher and tried to bite, spit on classmate, was placed in in-school suspension twice without my knowledge.
    10/25/06- K goes to cafeteria in the morning to get breakfast even though he is fed a large breakfast at home. K was placed on half days till evaluation is done, starting 10/30/06. Mom sent in snacks to help with hunger.
    10/26/06- K attempted to hit the Spanish teacher.
    11/01/06- Education evaluation test administered:
    11/07/06- Social history performed by: Tracy Fissel, MSW, school social worker
    11/09/06- Hit classmate with a pencil.
    11/15/06- Observed by special education teacher for 40 minutes.
    11/27/06- Psychoeducational evaluation performed by Nancy Carrington, EdS
    • Background information
    • Behavioral observations
    • Evaluation instruments
    • Behavior assessment system for children 2nd edition (both teacher and parent)
    • Review of school records
    • Stanford Benet Intelligence scales
    • Vineland adaptive behavior tests of achievement 3rd edition
    • Beery Buktenia developmental test of visual/ motor integration
    12/10/06- Mom placed K on a sugar free diet to see if that would help his behavior.
    12/12/06- Education Evaluation: summary: Reasons for history, Primary caregivers concerns, efforts used to address concerns, cultural concerns, family history, developmental history, medical history, environmental concerns, adaptive behavior educational history, summary of report. Per Tester; K has his own agenda and did what he wanted to do. Tests administered:
    • Woodcock Johnson tests of achievement III
    • Developmental test of visual motor integration
    • Visual perception and motor co-ordination, supplements included
    12/12/06- Parent/ Teacher conference to discuss test results. Was informed K was eligible for Developmental delay class (special education) Placed on IEP.
    12/13/06- K is paired with a buddy to perform assignments and go to the restroom.
    01/03/07- Placed back on full days after initial IEP meeting, annual goals put in place, Special education class 90 minutes per day/ 5 days a week.
    01/12/07- K took Milk from cafeteria
    01/17/07- Took bottle of water, teacher made him return it to the cafeteria, bade behavior all day.
    01/18/07-Screamed at classmates and teacher.
    01/23/07-Spit on classroom floor
    01/29/07-Took milk without permission.
    01/31/07- Complains everyday that he is hungry in the morning.
    02/02/07- Ran out of classroom all day
    02/12/07- Started a new daycare after he was asked to leave previous one for bad behavior.
    02/13/07- IEP meeting: Special education classes increased to 4 hours a day. He is given a visual schedule daily, tasks are simplified, frequent breaks, when making a request, the teacher is to use a light tone and use humor, use a to do and finished folder, so that he can check off completed work, reward good behavior, create a quiet corner to help him regroup when angry or upset. Functional behavior assessment requested.
    03/08/07- Evaluation by Child development center;
    • Comprehensive history
    • Physical exam
    • Wechsler intelligence scale for children 4th edition
    • Berry-Buktenica developmental test for visual-motor integration
    • Behavior assessment system for children (parent/teacher/self)
    • Brown ADD scales- parent
    • Conner’s teacher rating scale revised
    • House-tree person
    • Family drawings, spontaneous drawings
    • Brief behavior rating inventory of executive function (parent/teacher)
    • Scales of independent behavior revised
    • Gilliam aspersers disorder scale
    • Gilliam autism rating scale
    • Child behavior checklist for ages 6-18
    03/12/07- Asked to leave daycare, offered to pay her double to keep him there, and she accepted.
    03/16/07- K was suspended for 3 days for showing and rubbing his privates on another little boy.
    03/21/07- Went over results from child development center and school meeting, K placed on a bathroom plan. No longer allowed to go with other kids, only with adult supervision.
    03/23/07- IEP meeting, discussed results from child development center.
    03/31/07- Initial consult with psychiatrist.
    04/10/07- Initial consult with Licensed Clinical Social Worker (LCSW)
    04/17/07- Spit on classmates ear and plate at lunch
    04/18/07- Counseling session
    04/27/07- Counseling session
    05/02/07- K got out of bed after mom left for work, before aunt and uncle got up and tried to take his uncle’s car, when he couldn’t start it, he walked to school. Said he didn’t want to be late, also told mom, he was trying to come to my work. He made it almost the whole way there when a lady pulled over and took him to the school as he couldn’t show her where he lived. Police were called and he acted non chalant. He was never fazed by the questioning or mom crying. No remorse. Took K for an Emergency session with Licensed Clinical Social Worker (LCSW).
    05/06/07- K woke up six times during the night due to nightmares and refused to let me go to work the next day without him. (It was a Saturday)
    05/08/07-Counseling session
    05/11/07- K went into the teachers lounge and got a soda from the soda machine. Ran out of class several times.
    05/12/07- Very cranky and argumentative, pee’d on the bed even though he was awake.
    05/17/07- Called the emergency number for the school district during lunch at school.
    05/19/07- K was very rude and argumentative to mom today.
    05/20/07- K yelled at mom all day and was very belligerent.
    05/21/07- Sleep deprived EEG performed. All results were within normal limits.
    05/26/07- Psychiatrist consult today. Dr placed K on Celexa 5 mg 1 tab daily for anxiety.
    06/04/07- K was talking in his sleep asking for his mom Said he was going to drive a car to mom’s work, When uncle told him mom was in the next room sleeping, he asked for his teddy and went back to sleep.
    06/05/07- Didn’t remember saying that last night when questioned by his aunt. Only remembers asking for his bear.
    06/08/07- Increased medications to 10 mgs.
    06/30/07- Psychiatrist wanted ADHD scales redone. She thought that the anxiety was masking the symptoms.
    07/01/07- Went to Fourth of July fair, didn’t want to leave to go to the bathroom till the last minute and had accident.
    07/02/07- Was lollygagging in the morning, very rude and refused to get up.
    07/08/07- Tried to put a pack of bubble tape in his pocket at the store.
    07/11/07- Got into trouble for going to someone else’s backpack and taking cheetos, Said he found money to buy a candy bar and a package of crackers from the vending machines, brought home a pokemon card that wasn’t his, said he traded. Ate his and some other kid’s nametags.
    07/26/07- Pooped and pee’d all over his bedroom floor and played in it.
    07/28/07- Psychiatrist placed K on Risperdal .25mg 1 tab daily.
     
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