i'm really confused now...the teacher called

[Jena]

hi guys

sheesh always something with-me huh....?? here i am reading the responses from posting the home schooling thing. and i do agree was planning on turning it into an adventure.

the teacher called and said that her and the school pyschologist were discussing it and they both hope i get the answers i wnat and need for rin because everyone seems to feel that hospitalizing her so she can truly be observed is the way to go. that i'm spending alot of time, money i don't have (which at this point i don't care how long it takes to pay it off) to get an answer that i may not get becauese their only giving her standardized pyschoneurological tests adn won't be observing the behaviors all day and night long.

this being said it threw me into tail spin this happened at office right before i left. i went into my boss who knows me and rin's condition well she's watched it go downhill for 5 years and said to me jen i hope you get hte answers you need as well. yet at this point i think i'd wnat her hospitalized so that someone can truly observe her.

so here are my thoughts.......

1. if i admit her (i can't even find a place by the way) wouldn't her anxiety level fly thru roof most average functioning kids would. hence how could they observe true behaviors when everything will be exaggerated.

2. where???????? i've checked all over our area long island nyc etc. can't find one that i like. (this i can research though)



so here i am ready to book hotels tonight in jersey for testing and thinking maybe i'Tourette's Syndrome wrong thing, maybe i just wanted an answer and don't wnat to admit her (she is not in "crisis" mode) yet everyone feels as i said they won't be around her long enough to truly observe her and finally nail it on the head.

so yup i'm confused. i called columbia today told the girl said don't cancel but do you guys have a day program or inpatient?? she said she'll call me back. i feel bad i've driven these people nuts. there's another program sagamore children's facility i looked on web it's a state run facility..i'm not feeling it.

so now once again from one woman's words i'm contemplating. she's right though i know she is in my gut.

rin's anxiety seems to have lessened soemwhat in school, yet she isn't retaining anything or focusing is still somewhat withdrawn but it's lessened somewhat with me pulling her off medications, extremely needy academically and emotionally. wanted the teacher to re do the entire 20 min. lesson today. then teacher said to me can you have her in school earlier? i said ok i'm not taking my time in the morning to have an extra cup of coffee.....?? i'm dealikng with her attached to either hte couch or bed and i have to out wit her and talk her down in the morning most mornings.

so do i keep looking for another facility adn really admit her or do i keep with columbia's day testing. i will be very upset if they do the testing and they dont' hit the nail on the head.

jen soo confused.

 

[meowbunny]

Many kids thrive in a hospital setting. The behaviors seen at home or at school don't show up. Remember, most kids honeymoon in a new environment. I can't imagine any good hospital taking an 8 YO just for observation purposes. The child needs to be in a crisis mode.

As to hoping that testing will give you a definitive answer, the answer is probably not. It is rare for everything to show up, especially when the testee is young. The testing is a start. More a way to rule out things than to get a diagnosis that will last a lifetime.

If this were my child, I would go for the neuropsychologist evaluation and hope for at least some concrete answers. More importantly, some real recommendations that could help my child whether it be medications, behavior modification, play therapy or a combination of any of the above.

I do know how hard and frustrating all of this is. Not really knowing is frustrating and painful. It is hard to help your child when you don't know what is wrong.

 

[slsh]

Jennifer,

I'm really sorry you're getting mixed messages from the school. in my humble opinion, school staff have a much better opportunity to evaluate her (from an educational standpoint) than any inpatient stay ever would. They can't diagnose, but they see the real difficult child and should have a much better grasp on her day to day difficulties as well as a good handle on her strengths.

As Meowbunny said, honeymooning is an extremely common occurrence in the inpatient setting - let's face it, on a child psychiatric unit with structured "fun" (or at least different than at home) activities almost 24/7? Most kids are not going to demonstrate the behaviors that got them there in the first place. It's an artificial environment.

Personally, I would go with the outpatient testing but I would prepare for the possibility that you're not going to get a hard and fast "answer". There's some science involved here but there's also a lot of art.

thank you's had 24 (I think, I kinda lost track at 21) admissions in the past 10 years. The first dozen or so were honeymoons. I remember asking his psychiatrist at one point if they could *please* just stress him a big (maybe ask him to brush his teeth?) so they could see what we were really dealing with. He chuckled and said he knew what we were dealing with - the point of hospitalization in thank you's case was pure stabilization.

He's also had a boatload of evaluations over the years. I used to list all his "diagnoses" but it became alphabet soup - Intermittent Explosive Disorder (IED), ODD, PTSD, ADHD, depression, bipolar, schizophrenia, yadda yadda yadda. After years of this I realized a couple of things. The "diagnosis" depended on the doctor. The "diagnosis" didn't fix anything. At the end of the day, we are still left with thank you and his behaviors in all their glory. In looking at your signature, I think you've been there done that.

I truly don't mean to be discouraging but I am not terribly sure anyone is going to be able to definitively "hit the nail on the head". In my experience, you have to look thoroughly at the evaluation done, how it was done and what kind of shape difficult child was in when it was done, the results, and the recommendations and weigh them. It's very possible that parts of the evaluation will be helpful and parts won't be worth the paper it's written on.

It'd be much easier if there were a blood test or some other really firm diagnostic tool that would give us the answer as to how to help our kids learn and grow. It just doesn't exist. It's a whole lot of trial and error.

Do hang in there. I look at thank you (and myself) over the years and I see an evolution. We haven't found *the* answer yet but... things are better.

 

[klmno]

Hi, Jennifer! Things might be a lot different where you are but I'll let you know what I've discovered here- First, there are acute psychiatric hospital's where a difficult child can go for a short period (a few days- a week) if they are an immenent danger to self or others. This kind of danger was explained to me as pretty much having a knife in their hand getting ready to use it. An emergency room has to address it if you show up with difficult child and can show that they are in this shape.

Then there are inpatient evaluations. (They do evaluate them aat an acute facility but it's not the same.) I got the impression that this is what your sd was referring to. Anyway, here they last from 2-4 weeks, if you can find one that evaluation's kids. The big problem is that most insurance companies won't pay for them and there are rarely openings anyway. When my difficult child racked up 7 charges in less than 2 hours after staying out of trouble for one year (at 12 yo), I tried to get him in for this. I couldn't- insurance wouldn't pay and judge wouldn't order it because then county would have to pay. A hundred of people might tell you this would be the best thing- I definitely thought it would be the best thing for my difficult child. However, that won't get them in and pay for it, so if I were you, I wouldn't stress on whether or not to go this route unless the sd can tell you where to go, how to get difficult child in there, and who's going to pay for it. That will probably end that option right there.

The third situation, of course, is long term psychiatric hospital stay, which usually doesn't apply to the young ones.

This is just our experience here in VA-

My suggestion would be to keep going on the track you are going.

 

[BusynMember]

I like neuropsychologist exams FAR more than hospitalization for diagnostic purposes. The school district is educators. They don't know anything about how to best diagnose our kids.

 

[Jena]

wow i'm sitting here reading your posts and i'm so new at this in a sense, i've never before joined any type of group to hear what others experience and i am also very inexperienced with all of this.

I guess I was hoping that there would be a "true" answer to the problem, we've tried 7 different medications' that keep failing, several different testings with no clear answers, then when the teacher said that today a light bulb sort of went off in my head. i am easily swayed when i am stressed, alot more grounded when calm adn able to make much better decisions. sheesh good i dont' have a high pressured job, huh...?? actually can make very good decisions in other areas of my life (i have made a few good ones) yet when it pertains to my difficult child i can't.

so we're all saying basically that bringing her to the out patient testing right now should remain in position.

thanks,
Jen

 

[nvts]

Jen, I just had a thought. Do you have medical coverage? If so, could columbia bill some of the neurological testing to your medical insurance. Check with your insurance to see if you need a referral from your pediatrician and make sure that you have them.

As far as the psychological testing goes, most hospitals in NY have a sliding scale for parents who can't afford this type of thing. I'd ask to speak to a patient services rep at columbia that might be able to help you out.

I know this isn't in the realm of the thread, but it's recycle night and I don't have a lot of time.

Later!
Beth

 

[Jena]

thanks Beth

yup i found out they'll reimburse a certain percentage of the testing costs. I'm not overally concerned with-that right now, even though I probably should be.

thanks!!

good luck with-recycling

 

[BusynMember]

I have found out first hand, in my own experience, that the types of tests NeuroPsychs do have been far more helpful than any of the three times I've been in the hospital for bipolar. The hospital tended to do more observation and group therapy, plus seeing a therapist or a Psychiatrist (not often either) and I felt the results were not as accurate. On top of that, my first hospitalization was TEN WEEKS. Back then, you didn't get kicked out before you were better. Now they are on a schedule to rush you out. A lot of my time in the hospitals was spent not being evaluated at all. Therapy is not diagnostic. Your child may not even have a psychiatric problem. It may be a neurological problem. Then what?
Hospitalization is more in my opinion for stabilization of medications than diagnostic testing. And not all problems require medication. I'm puzzled that the school would tell you to hospitalize your child. I wouldn't listen to them. JMO

 

[Jena]

hi

i'm on my cell right now booking the hotel in new jersey......

schools' outta their mind...

thanks for whipping my *ss back into reality mode.......

oh how easily i slip these days.. columbia's going to think i'm outta my mind, i called them today and asked them about admitting her????

i'm going to bed.....

nite
thanks
jen

 

[Marguerite]

Jen, our medical system is different here, but since you seem as desperate as I was to get some answers, I'll share with you...

I rang every doctor I was referred to for difficult child 3 (mostly - the others too). With difficult child 1, I'd simply taken the first referral, seen that bloke and stayed put (with no information from anywhere else) until we had to move on (the guy was a nutter). we had a SEQUENTIAL approach to diagnosis & management. As a result, I missed out on being given some very practical advice, because we really were only exposed to a narrow point of view.

With difficult child 3, I felt his problems were worse and I wanted answers fast, from wherever I could get them. With long waiting times, I simply made appointments and waited. Whoever came up first got the gig - but I didn't cancel the other appointments until AFTER the consult, in case we struck a dud. Which we did, a few times. I was looking for answers as well as someone prepared to manage my kids. A number of doctors saw the kids but gave no advice or diagnosis. Another saw the kids but was too far away to take them on; plus his books were full. The name he referred us to was not currently in practice, so we had to find a new line of enquiry.

All along the way, we were gathering information and getting closer to answers, like triangulation using satellite tracking.

And another thing I was learning - labels are often inexact. easy child 2/difficult child 2 still does not have an appropriate label, in my view. But we have a good idea of her issues, and how to manage them. A lot of what we have learned, we've taught ourselves. Expert support is an adjunct, not the be-all-and-end-all. I expected a diagnosis to answer all our questions. Even the doctors gave us this impression - "Now I've told you that difficult child 3 is autistic, doors will open. You will now have all the support and intervention for him that you need, the Autism Association will see to that."
In reality, the Autism Association were a struggling, under-funded and over-worked charity, with long waiting lists and too far away from us to be much help.

What I learned from all our enquiries - take what info we can get and be grateful. Don't let things lie, but always ask questions, keep checking the 'fit' of the label and challenge it if necessary (in the same way you 'challenge' a possible allergy to make sure you haven't made a mistake). But the biggest thing - trust your own instincts as a parent. If you try what the experts advise, and it' a total disaster, and you're fairly sure your own methods will work better, then trust yourself.

Keep good records. Back them up. Scan all reports so you don't lose any. Never hand over originals with the expectation that the doctor will copy them and give the originals back. Become darn good at keeping your files in order.
Write down any interesting things that happen. You may think you will remember, but you won't. And once you free your mind from having to hold all that information, you will reduce your stress.

And last - don't feel guilty in the slightest for being so determined to find out stuff, and for wanting to get the best help you can for your child. Go ahead. Take what you need. She's your child, you need to do this. Put guilt aside and go for it.

And remember, if you get the answers you need from Dr A, and you feel guilty and cancelling doctors B, C & D - remember that the minute you cancel, that receptionist is on the phone to the names on her "please call if there's a cancellation" list, and offering them the miracle they've been waiting for.

Don't feel guilty about that, either.

Marg