Re: frustration occurs

[Guest guest]

Oh Roxanna,

I think you and I need to get together and do

something!(What I'm not sure. And I'm not sure my head

is on straight enough to figure it out.)

I am so sorry you had such a frustrating day. I know

it took every ounce of flesh to keep your mouth shut

and not let the woman know exactly how you felt. I

know I would. I will be watching to see how you make

out as the " saga " continues.

I just had my IEP for last Thursday. has

difficulty (as a lot of kids with asperger's do) with

turning in homework. Now he's not doing a lot of it.

The case manager is great. I got the draft and I

emailed him ahead of time to let him know my questions

regarding the draft. One was homework. I ask for

anything specific. Even at the IEP meeting, I left it

open as to how they wanted to address it. But he is

notorious for turning it in late. He will have it done

and won't turn it in, or he will wait until it's due

to let them know he didn't understand it, etc.

(Self-advocacy skills went into goals.)

The special ed rep was NOT happy with the idea of a

homework accomodation. She went through all these

scenarios with (almost made him cry), asking

him if he could do this or that. He told her that he

couldn't. At one point she told him that he was going

to have to " get over his shyness " (can you see the

smoke rising?!) and go to the teacher and tell her

what he needed. (One, the teacher she was referencing

and the teacher rep is one he doesn't like, and she

has a reputation for being mean-she did back when I

was in the school and I just had my 20th class reunion

this past fall...)

Well, after MUCH debate, they settled on his being

able to turn in work late 50% of the time, and are

going to try and cut back on the amount of work he has

to do.

Well, the case manager emailed me today and told me of

's grade so far half-way through the 9-weeks.

It's an F. He had a test he had to finish. The teacher

agreed he could turn it in late, for full credit. He

turned it in and got 7 out of 47 right. It was an

open-note test!!! When asked why he did so poorly, he

told the case manager he didn't want to do it. Then he

said he didn't understand what to do. So the case

manager is at a loss of what to do. I don't know what

to do.

I keep getting all these bad things about him heaped

up on me. He wants to stay on an advanced studies

diploma. I asked him in the IEP meeting if he'd rather

go down to standard and ease his work load. He said he

did not. (The special ed rep had said at one point,

" Is this doable? Can he do this? I am a realist and

believe in being 'real'! " )

So, I don't know what we are going to do. I hope the

less work will help him. But I think he's checked out

for the year.

The case manager has been the best I've ever had for

. He knows his stuff and makes me think he has

lived with for the past 15 years and knows him

as well as I do. So, if he's frustrated.... I just

don't know what to do and am about to throw in the

towel....AAAHHH!

So I am feeling your frustration! We need to get

together. You are only an 8 hour drive! LOL!

-Melinda H

[Guest guest]

Ah, Roxanna, sorry to hear that you have a lot on your plate at this

time. It sounds extremely frustrating and tiresome... try and keep

your chin up.

Re: IPP's (IEP's), lol, I remember the first time at my son's school

that I went in and an IPP was printed out all neat and proper and

ready for me to sign. I said, " Um, I think I'll take this home first

and give myself a chance to take it all in " . Well, you would have

thought by the look on the face of admin. that I was from another

planet! Honestly, I do not sign anything without reading it

thoroughly, let alone my child's education plan. So, sure enough, as

I read through, I found many gaps and added my own notes and goals to

the mix. (Hee Hee) I photo-copy everything to check back upon it and

then request a copy from the school as well to make sure. I don't

believe I've ever once signed an IPP without first adding to it. Can

you do the same, Roxanna... Refuse to sign initially and then add to

the agenda as you see fit? Good-luck and I hope they don't pounce on

you if you decide to insist! ; )

Velvet

>

> I have had a lot of things to deal with lately with my kids. IEPs

stacked up, evaluations, achievement testing, etc. I went to an IEP

for my 19 yo and there were a number of things that were never

addressed or done at all from the last IEP. I noticed that these

items were not written on the new IEP. So the sped teacher tells

me, " There is just no nice way to say this...it just wasn't done. " I

was like, " uh....okay..... " and she continues to say that because it

wasn't done, she didn't write it on the new IEP. I almost wanted to

LOL at the " logic " .

[Guest guest]

Is it a full moon? I had Conor's IEP this week (first meeting of probably 10). He is transitioning to the middle school. Initially we discussed ESY. His case manager had emailed the LEA ahead of time to let them know what I was proposing for ESY so that we would have a clear answer, or at least someone who would approve or disapprove at the meeting. Well their plan was that the district would pay for the summer camp, if we wrote into the IEP that the 1:1 would be weaned after a 6-8 week initial settling period. I said "Excuse me. I feel like you are asking me to make a deal and I don't believe that is appropriate". Of course the LEA said she would need to go back and discuss this with higher ups. This is what I find depressing. The district puts it into the hands of the LEA and actually thinks I will fall for a plan like that. I feel bad for the families that fall for it.... Pam Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

[Guest guest]

Roxanna,

Sounds like to me, you need to contact your state Board of Education!

I'm very lucky to have a wonderful educational team for both of my

children, but they all know that I prepare ahead of time for each &

every IEP meeting. I prepare my own goals for my children. I use the

book: The Complete Guide to IEPs (it's available on Amazon.com).

The educational team knows that when I come to their meeting, that I

will not sign anything until they have incorporated my own goals for

my children. I have let them know in no uncertain terms that I will

not hesitate to contact the Board of Ed, if they cannot resolve the

problem.

I also have private evaluations done on both my children, my

insurance pays for one each year under the autism clause. A child

development specialist usually conducts those evals. BEFORE, the IEP

meeting, I provide copies of those evals to the educational team, so

they can see what a specialist has already determined, then MOST of

the time they use those evals to prepare the IEP.

I'm not sure if you can do this, but if you can, have your ds

evaulated by a professional. Even if you have to pay out of pocket,

they are usually $250 at most. To me they are worth every penny!

With that eval, you have evidence to present to the Board of Ed, if

need be, that your ds needs special considerations for his

educational success!

I hope this bit of information has helped. I know and understand

your frustration, been there done that! LOL! I wish you all the best

in your quest for your son.

Connie

>

> I have had a lot of things to deal with lately with my kids. IEPs

stacked up, evaluations, achievement testing, etc. I went to an IEP

for my 19 yo and there were a number of things that were never

addressed or done at all from the last IEP. I noticed that these

items were not written on the new IEP. So the sped teacher tells

me, " There is just no nice way to say this...it just wasn't done. " I

was like, " uh....okay..... " and she continues to say that because it

wasn't done, she didn't write it on the new IEP. I almost wanted to

LOL at the " logic " . And even so, he's 19 yo now and I am only there

because he refuses to go on his own. The fact that he can't attend

his own meeting is not a problem for them that it is for me. <g>

But again, this is how it went and I really left discouraged about

the whole process. I mean, knowing the laws means nothing if you

don't have people willing to fulfill their duties as written in the

IEP. And more so, we have a ds who would never agree to another

therapy in his life. He was really abused by the system and I don't

blame him. But really this leaves a basically useless IEP. Oh

well.

>

> So fast forward to today when I took my 11 yo (hfa) to another eval

with the OT. He is having his 3 year MFE done and we've been going

to this place down the street for OT and ST eval's since we e-

school. I have filled out pages of forms asking me all sorts of

questions and I even got excited as I always do because they are

asking me questions about things that are serious problems for my

kid! So I feel, " Hey! I'm in the right place! Alright! " And he

has several days of testing and each time, OT tells me he is all over

the place, his writing sucks, he does really eat plastic, and on and

on. So again, I feel as if I am in the right place and perhaps we

will get him some help at long last for a number of problems he has.

>

> Today, though, she finished his eval and she told me that he won't

be qualifying for OT. I was really taken off guard because I had

felt all along that she was really understanding my kid. I had told

her things in advance as well...such as that he does have great fine

motor but his stamina, motor planning and spacing is

terrible....things like that. So then she starts telling me that his

handwriting is awful but since he has all the mechanics down, she has

determined that his handwriting is a problem of his own " personal

responsibility. " I need to hold him accountable and he will write

just fine. She repeated this part about 5 times in a row to me so I

can only imagine the look on my face and my inability to open my

mouth because I was going to throw up on the spot caused her to think

I did not comprehend what she was saying. I would just say, " Oh

really " and " I see. " So she'd say it again. And I would just get

that " ready to vomit " look. And she'd repeat. Now what is the

point?!?!?! lol

>

> She said his chewing on non-food items was not " educationally

relevant. " Well, she said that several times about several areas of

concern that he has major issues in. I told her that the IDEA is not

only about " educationally relevant " but he also needs to learn basic

living skills so he can become an independent adult some day - that

this is in the IDEA. She said, " Yes, I know but well, we'll see how

far that goes... " as if it was just an idea and not part of the law.

Like I made it up on the spot or something. lol. Let's see how far

you get arguing that lame piece of the law, chickie. lol. Argh!

And she would make suggestions of things I could do at home with him

like buy him a large therapy ball to bounce on. I actually

sputtered, " Did you remember that he eats plastic? " and my ds is

standing right there and he says, " Well, uhm, actually I don't

swallow. " And she looks as if I am making it up that he would eat a

hole in the therapy ball and that we haven't already gone through a

dozen over the years before giving up on them entirely. I just felt

so misunderstood all of the sudden when I had felt understood

earlier. How can it change so fast?

>

> Longer story longer, she said she would write up a sensory diet for

us. For instance, she is going to list " crunchy foods " for us to

feed him so he will chew on real food instead of plastic or paper.

When I was telling my dh about this conversation, he got exasperated

at this point and said, " Do these people think we have never tried

the obvious? Do they think we don't know what crunchy foods are? "

LOL. But that was not even on my mind at the time of the

conversation. Instead, I was thinking, " Did she think I was lying

when I said he doesn't eat anything but bread products? " It isn't

like we can go get a bushel of carrots and a bag of pretzels and let

him snack away with some dip. I WISH IT WERE SO SIMPLE!!!!! And if

it were that simple, we wouldn't be seeing an OT for an eval, now,

would we? ARGH!!

>

> I just was so frustrated afterwards. After dealing with everything

else, with my older ds's stuff and then having to school my 11 yo at

home and now this...I just wanted to scream. I sometimes lose faith

that the system does anything worthwhile except regurgitate crap. I

feel like there are people out there making money off my kids for

nothing more than saying they can't help them - which I could have

stayed home and not bothered! What is the point? Instead of going

to college to get a degree in " I can't help you with anything on this

list " , I was drafted into the " be an autism mommy " army. It's a

difference between being the one pooped on and the pooper.

>

> In dealing with and teaching my 11 yo - who is hyper, inattentive

and impulsive - I just really struggle each day to stay sane and keep

my sense of humor. She even commented on how hard it was to test

him, he was all over, touching everything, hard to keep on task,

etc. But now she said she can't help with any of that. It is just

not possible. This is just how it is and I need to get used to it.

(duh, he's my kid, was I planning to trade him in for a nicer model?

lol, yes at this point I am getting sarcastic and rude in my

mind....) So then I felt that today I just lost the humor with this

OT. She said she was " so sorry to have to say all of this " with a

painted on sad face. And I realized I must have looked as depressed

as I felt. Where do you go for help when there is nobody who will or

can help? Of course, she determined that she cannot do anything to

help him but that I should take him to a doc and get him some meds.

That is the only thing that can help him.

>

> :::::banging head into cyber wall:::::

>

> So, that did not go well. lol. Can we wait until we get the

official report? And will Roxanna stay sane during the MFE meeting

when discussing this report? Stay tuned....lol.

>

> I will try to recharge. There are just times that a person takes

for so long and there is one too many problems in a row. KWIM?

>

> Roxanna

> Autism Happens

>

[Guest guest]

These are new IEP team people that I will be dealing with so I am not sure if they realize that I will bring in my own list to add to the MFE. We had an IEP meeting already for a temporary IEP until the MFE is done and I emailed them a few pages of my "thoughts". So I do think that they are getting a clue as to the extent of my "involvement" in the process. The school, in the past, already knew I would be a "difficult" parent. (i.e. read and contribute to the process...)

I have always added and corrected and argued when I feel strongly about something. One year, my older ds had his MFE and I think the School psych had to re-write it 5 times before I agreed to sign. One time, they added what I wanted but wrote it as, "Parent states that..." as if it wasn't true and they put it in to humor me (which is probably exactly what they were doing!) So I had that taken out. You know, I argued that if I can prove it and have data to back it up, then it's not just a parent crazily insisting that we put this in the MFE. And then once it was all done and I signed off on it, I wrote and requested an outside IEE. lol. I wasn't trying to be a PIA but there were some major problems going on, long story there. It is just funny now to say what happened - now that I am not trying to strangle anyone...lol...

My 11 yo had his last MFE and the OT at school said the basic same thing at the time - a whole lecture on "personal responsibility" instead of a real report listing the OT issues. I actually did not argue it at the time because my older ds was having a major crisis at school and I could not deal with it all at once. Plus the OT at the school was not so great and I knew that arguing for services meant getting services from an uninspired person. So I decided not to do this. Oh yeah, I spent the next 2 1/2 years listening to teachers complain about his handwriting, his fidgeting, his inattention, yadda yadda yadda. But when you have multiple kids with issues, you sometimes have to juggle and can't go in for every single issue. I have to pace myself. <g>

Now the older one is doing well in school so I have time to address these things with the 11 yo. Plus, since I am his teacher every day, these problems affect ME. It wasn't that I didn't care about the problems if they affected other teachers - I always did. But you know, it seemed somehow ridiculous that I would have to fight for help alone to help them when "they" are the ones I have to fight to get the help from. So I figured having a number of teachers prepared to swear that he really needs help was a good thing. <g> Why move the mountain alone, right!

Anyway, now I am "the teacher" and these problems are so major and interrupt his ability to learn. So it is even more important to me to address them now and better, I thought, because we did not have to deal with the lame school OT. I was not expecting this one. ugh ugh ugh. I mean, I swear - I took him to his first appt. wearing his little brother's shirt because he had no short sleeve shirts left. He had eaten holes in all his clothes. He had one pair of sweat pants left - he picks at the seams until they pull out, then he chews the fabric and threads. And the pants he had had a spot on them with teeth marks that did not even come out in the wash - they were permanent imprints in the fabric.

So he literally had nothing to wear. But you tell people this and it's like they think you are exaggerating or something. She obviously didn't think it was that bad? I don't know what she was thinking but I was totally serious. And further, I do not want to have a conversation with someone as to whether not having any clothes without chew holes is an educationally relevant problem or not! It was not a problem to her because he is homeschooled! I couldn't believe it!!! Hello! Earth to therapist! And even worse, it isn't her place to make these determinations. She needs to write an accurate report and then the "TEAM" discusses the results and decides if these issues are "Educationally relevant" or if he needs OT to address the problems listed. I think the whole idea of having these therapists pre-determine whether problems are relevant or not defeats the purpose of having an evaluation in the first place! Don't just list the problems you feel will pass inspection at an IEP meeting! And yet, that is what will happen.

Well, I am still ranting!! I definitely will attend the MFE meeting with my own list to discuss and even add my own follow up letter(s) on these things. I told my dh he will have to come to the meeting so he can make sure I stay seated and don't start yelling. <g> I mean, these new people on the IEP team may understand and work with me on things. I feel like they will and I will assume that they will unless proven otherwise! I just didn't expect this conversation with the OT yesterday. And the more I thought about it, the more depressing it was!

RoxannaAutism Happens

( ) Re: frustration occurs

Ah, Roxanna, sorry to hear that you have a lot on your plate at this time. It sounds extremely frustrating and tiresome... try and keep your chin up.Re: IPP's (IEP's), lol, I remember the first time at my son's school that I went in and an IPP was printed out all neat and proper and ready for me to sign. I said, "Um, I think I'll take this home first and give myself a chance to take it all in". Well, you would have thought by the look on the face of admin. that I was from another planet! Honestly, I do not sign anything without reading it thoroughly, let alone my child's education plan. So, sure enough, as I read through, I found many gaps and added my own notes and goals to the mix. (Hee Hee) I photo-copy everything to check back upon it and then request a copy from the school as well to make sure. I don't believe I've ever once signed an IPP without first adding to it. Can you do the same, Roxanna... Refuse to sign initially and then add to the agenda as you see fit? Good-luck and I hope they don't pounce on you if you decide to insist! ; )Velvet>> I have had a lot of things to deal with lately with my kids. IEPs stacked up, evaluations, achievement testing, etc. I went to an IEP for my 19 yo and there were a number of things that were never addressed or done at all from the last IEP. I noticed that these items were not written on the new IEP. So the sped teacher tells me, "There is just no nice way to say this...it just wasn't done." I was like, "uh....okay....." and she continues to say that because it wasn't done, she didn't write it on the new IEP. I almost wanted to LOL at the "logic".

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.6/1404 - Release Date: 4/29/2008 6:27 PM

[Guest guest]

We need to go out and drink heavily is what we need to do. lol. I am not even a drinker. lol. But desparate times....lol....

I cannot stand being in meetings with people who have this "he has to take responsbility" attitude towards kids with sped needs. I've had some of them myself over the years and I remember early on being so frustrated that they did not "get it" and being unable to explain it to them myself. I understood but I didn't know how to explain so they would understand.

I got better over the years because I realized that people who come to meetings with that attitude and trying to make life harder for everyone with their sense of "teaching responsibility" to the kid who needs help - they don't want to understand any differently. They believe they are right and do not want to learn otherwise! As the saying goes, "They don't know what they don't know."

RoxannaAutism Happens

Re: ( ) frustration occurs

Oh Roxanna,I think you and I need to get together and dosomething!(What I'm not sure. And I'm not sure my headis on straight enough to figure it out.)I am so sorry you had such a frustrating day. I knowit took every ounce of flesh to keep your mouth shutand not let the woman know exactly how you felt. Iknow I would. I will be watching to see how you makeout as the "saga" continues.I just had my IEP for last Thursday. hasdifficulty (as a lot of kids with asperger's do) withturning in homework. Now he's not doing a lot of it.The case manager is great. I got the draft and Iemailed him ahead of time to let him know my questionsregarding the draft. One was homework. I ask foranything specific. Even at the IEP meeting, I left itopen as to how they wanted to address it. But he isnotorious for turning it in late. He will have it doneand won't turn it in, or he will wait until it's dueto let them know he didn't understand it, etc.(Self-advocacy skills went into goals.) The special ed rep was NOT happy with the idea of ahomework accomodation. She went through all thesescenarios with (almost made him cry), askinghim if he could do this or that. He told her that hecouldn't. At one point she told him that he was goingto have to "get over his shyness" (can you see thesmoke rising?!) and go to the teacher and tell herwhat he needed. (One, the teacher she was referencingand the teacher rep is one he doesn't like, and shehas a reputation for being mean-she did back when Iwas in the school and I just had my 20th class reunionthis past fall...)Well, after MUCH debate, they settled on his beingable to turn in work late 50% of the time, and aregoing to try and cut back on the amount of work he hasto do. Well, the case manager emailed me today and told me of's grade so far half-way through the 9-weeks.It's an F. He had a test he had to finish. The teacheragreed he could turn it in late, for full credit. Heturned it in and got 7 out of 47 right. It was anopen-note test!!! When asked why he did so poorly, hetold the case manager he didn't want to do it. Then hesaid he didn't understand what to do. So the casemanager is at a loss of what to do. I don't know whatto do.I keep getting all these bad things about him heapedup on me. He wants to stay on an advanced studiesdiploma. I asked him in the IEP meeting if he'd rathergo down to standard and ease his work load. He said hedid not. (The special ed rep had said at one point,"Is this doable? Can he do this? I am a realist andbelieve in being 'real'!") So, I don't know what we are going to do. I hope theless work will help him. But I think he's checked outfor the year.The case manager has been the best I've ever had for. He knows his stuff and makes me think he haslived with for the past 15 years and knows himas well as I do. So, if he's frustrated.... I justdon't know what to do and am about to throw in thetowel....AAAHHH!So I am feeling your frustration! We need to gettogether. You are only an 8 hour drive! LOL! -Melinda H

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.6/1404 - Release Date: 4/29/2008 6:27 PM

[Guest guest]

Hi Connie,

thanks for the advice. My problem was that this is a "private practice professional" (not a school OT) who is doing the eval. I am "e-schooling" my ds so it is a public school but not a brick and mortar building public school. So if a child needs services, they get those services by contracting with private practice therapists. Because this is his MFE, all the eval's are being done by private practice therapists. That is why I got so frustrated - I was expecting "better" I guess. I am not saying school OT's are not good enough but the ones we have dealt with at our particular school have been less than inspiring and helpful. So I was hoping for someone who gets these problems because we were having it done by a private practice person vs. our local school OT. I hope I said that without being offensive to any school OT's on the list who really do work hard to help.

We have not had a meeting yet to discuss the eval results. In fact, she had not yet written up a report. She was just telling me her overall observations and thoughts. I look forward to seeing her report. I don't know yet how I will handle things. I will wait and see what the report says, what the testing results say. Then I will have a better idea of how to respond to this. I was just floored to have had this conversation yesterday. I guess my point was that I am just tired of having to have these discussions with people. KWIM?

RoxannaAutism Happens

( ) Re: frustration occurs

Roxanna,Sounds like to me, you need to contact your state Board of Education! I'm very lucky to have a wonderful educational team for both of my children, but they all know that I prepare ahead of time for each & every IEP meeting. I prepare my own goals for my children. I use the book: The Complete Guide to IEPs (it's available on Amazon.com). The educational team knows that when I come to their meeting, that I will not sign anything until they have incorporated my own goals for my children. I have let them know in no uncertain terms that I will not hesitate to contact the Board of Ed, if they cannot resolve the problem. I also have private evaluations done on both my children, my insurance pays for one each year under the autism clause. A child development specialist usually conducts those evals. BEFORE, the IEP meeting, I provide copies of those evals to the educational team, so they can see what a specialist has already determined, then MOST of the time they use those evals to prepare the IEP.I'm not sure if you can do this, but if you can, have your ds evaulated by a professional. Even if you have to pay out of pocket, they are usually $250 at most. To me they are worth every penny! With that eval, you have evidence to present to the Board of Ed, if need be, that your ds needs special considerations for his educational success!I hope this bit of information has helped. I know and understand your frustration, been there done that! LOL! I wish you all the best in your quest for your son.Connie>> I have had a lot of things to deal with lately with my kids. IEPs stacked up, evaluations, achievement testing, etc. I went to an IEP for my 19 yo and there were a number of things that were never addressed or done at all from the last IEP. I noticed that these items were not written on the new IEP. So the sped teacher tells me, "There is just no nice way to say this...it just wasn't done." I was like, "uh....okay....." and she continues to say that because it wasn't done, she didn't write it on the new IEP. I almost wanted to LOL at the "logic". And even so, he's 19 yo now and I am only there because he refuses to go on his own. The fact that he can't attend his own meeting is not a problem for them that it is for me. <g> But again, this is how it went and I really left discouraged about the whole process. I mean, knowing the laws means nothing if you don't have people willing to fulfill their duties as written in the IEP. And more so, we have a ds who would never agree to another therapy in his life. He was really abused by the system and I don't blame him. But really this leaves a basically useless IEP. Oh well. > > So fast forward to today when I took my 11 yo (hfa) to another eval with the OT. He is having his 3 year MFE done and we've been going to this place down the street for OT and ST eval's since we e-school. I have filled out pages of forms asking me all sorts of questions and I even got excited as I always do because they are asking me questions about things that are serious problems for my kid! So I feel, "Hey! I'm in the right place! Alright!" And he has several days of testing and each time, OT tells me he is all over the place, his writing sucks, he does really eat plastic, and on and on. So again, I feel as if I am in the right place and perhaps we will get him some help at long last for a number of problems he has.> > Today, though, she finished his eval and she told me that he won't be qualifying for OT. I was really taken off guard because I had felt all along that she was really understanding my kid. I had told her things in advance as well...such as that he does have great fine motor but his stamina, motor planning and spacing is terrible....things like that. So then she starts telling me that his handwriting is awful but since he has all the mechanics down, she has determined that his handwriting is a problem of his own "personal responsibility." I need to hold him accountable and he will write just fine. She repeated this part about 5 times in a row to me so I can only imagine the look on my face and my inability to open my mouth because I was going to throw up on the spot caused her to think I did not comprehend what she was saying. I would just say, "Oh really" and "I see." So she'd say it again. And I would just get that "ready to vomit" look. And she'd repeat. Now what is the point?!?!?! lol> > She said his chewing on non-food items was not "educationally relevant." Well, she said that several times about several areas of concern that he has major issues in. I told her that the IDEA is not only about "educationally relevant" but he also needs to learn basic living skills so he can become an independent adult some day - that this is in the IDEA. She said, "Yes, I know but well, we'll see how far that goes..." as if it was just an idea and not part of the law. Like I made it up on the spot or something. lol. Let's see how far you get arguing that lame piece of the law, chickie. lol. Argh! And she would make suggestions of things I could do at home with him like buy him a large therapy ball to bounce on. I actually sputtered, "Did you remember that he eats plastic?" and my ds is standing right there and he says, "Well, uhm, actually I don't swallow." And she looks as if I am making it up that he would eat a hole in the therapy ball and that we haven't already gone through a dozen over the years before giving up on them entirely. I just felt so misunderstood all of the sudden when I had felt understood earlier. How can it change so fast?> > Longer story longer, she said she would write up a sensory diet for us. For instance, she is going to list "crunchy foods" for us to feed him so he will chew on real food instead of plastic or paper. When I was telling my dh about this conversation, he got exasperated at this point and said, "Do these people think we have never tried the obvious? Do they think we don't know what crunchy foods are?" LOL. But that was not even on my mind at the time of the conversation. Instead, I was thinking, "Did she think I was lying when I said he doesn't eat anything but bread products?" It isn't like we can go get a bushel of carrots and a bag of pretzels and let him snack away with some dip. I WISH IT WERE SO SIMPLE!!!!! And if it were that simple, we wouldn't be seeing an OT for an eval, now, would we? ARGH!!> > I just was so frustrated afterwards. After dealing with everything else, with my older ds's stuff and then having to school my 11 yo at home and now this...I just wanted to scream. I sometimes lose faith that the system does anything worthwhile except regurgitate crap. I feel like there are people out there making money off my kids for nothing more than saying they can't help them - which I could have stayed home and not bothered! What is the point? Instead of going to college to get a degree in "I can't help you with anything on this list", I was drafted into the "be an autism mommy" army. It's a difference between being the one pooped on and the pooper. > > In dealing with and teaching my 11 yo - who is hyper, inattentive and impulsive - I just really struggle each day to stay sane and keep my sense of humor. She even commented on how hard it was to test him, he was all over, touching everything, hard to keep on task, etc. But now she said she can't help with any of that. It is just not possible. This is just how it is and I need to get used to it. (duh, he's my kid, was I planning to trade him in for a nicer model? lol, yes at this point I am getting sarcastic and rude in my mind....) So then I felt that today I just lost the humor with this OT. She said she was "so sorry to have to say all of this" with a painted on sad face. And I realized I must have looked as depressed as I felt. Where do you go for help when there is nobody who will or can help? Of course, she determined that she cannot do anything to help him but that I should take him to a doc and get him some meds. That is the only thing that can help him.> > :::::banging head into cyber wall:::::> > So, that did not go well. lol. Can we wait until we get the official report? And will Roxanna stay sane during the MFE meeting when discussing this report? Stay tuned....lol. > > I will try to recharge. There are just times that a person takes for so long and there is one too many problems in a row. KWIM? > > Roxanna> Autism Happens>

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.6/1404 - Release Date: 4/29/2008 6:27 PM

[Guest guest]

You are SOOOOOOOO right, Roxanna. I have heard that thousands upon thousands of times about my 14 year old. You cannot MAKE someone do something they are not capable of; I would say that, and they would tell me how I am just making excuses and don't have high enough expectations, and it is no wonder he is not responsible because I am not making him be. Short of me walking inside his brain, I did all I could; cannot do something you cannot do, period. That is like telling someone that cannot walk to just stand up and walk; they make it out like it is that simply. When you say things like "stand up and walk" and give examples, they get even more angry at us / me, etc. It stinks but one cannot do something they cannot do. In the process, I think 1/2 the anger issues then come from that---my son cannot STAND it that he cannot ever find anything, is NOT organized, but no matter what we try and implement, he cannot make it work for him / cannot remember to do it, whatever, so he just is in a cycle of chronic anger, trying to do what people say he can just do (be organized) (or whatever it is)-----lowering his self-esteem 'cuz he failed again (that is even what he will say---I'm a failure, etc.)-----it stinks. Ruthie

From: madideas@...Date: Wed, 30 Apr 2008 09:06:33 -0400Subject: Re: ( ) frustration occurs

We need to go out and drink heavily is what we need to do. lol. I am not even a drinker. lol. But desparate times....lol....

I cannot stand being in meetings with people who have this "he has to take responsbility" attitude towards kids with sped needs. I've had some of them myself over the years and I remember early on being so frustrated that they did not "get it" and being unable to explain it to them myself. I understood but I didn't know how to explain so they would understand.

I got better over the years because I realized that people who come to meetings with that attitude and trying to make life harder for everyone with their sense of "teaching responsibility" to the kid who needs help - they don't want to understand any differently. They believe they are right and do not want to learn otherwise! As the saying goes, "They don't know what they don't know."

RoxannaAutism Happens

Re: ( ) frustration occurs

Oh Roxanna,I think you and I need to get together and dosomething!(What I'm not sure. And I'm not sure my headis on straight enough to figure it out.)I am so sorry you had such a frustrating day. I knowit took every ounce of flesh to keep your mouth shutand not let the woman know exactly how you felt. Iknow I would. I will be watching to see how you makeout as the "saga" continues.I just had my IEP for last Thursday. hasdifficulty (as a lot of kids with asperger's do) withturning in homework. Now he's not doing a lot of it.The case manager is great. I got the draft and Iemailed him ahead of time to let him know my questionsregarding the draft. One was homework. I ask foranything specific. Even at the IEP meeting, I left itopen as to how they wanted to address it. But he isnotorious for turning it in late. He will have it doneand won't turn it in, or he will wait until it's dueto let them know he didn't understand it, etc.(Self-advocacy skills went into goals.) The special ed rep was NOT happy with the idea of ahomework accomodation. She went through all thesescenarios with (almost made him cry), askinghim if he could do this or that. He told her that hecouldn't. At one point she told him that he was goingto have to "get over his shyness" (can you see thesmoke rising?!) and go to the teacher and tell herwhat he needed. (One, the teacher she was referencingand the teacher rep is one he doesn't like, and shehas a reputation for being mean-she did back when Iwas in the school and I just had my 20th class reunionthis past fall...)Well, after MUCH debate, they settled on his beingable to turn in work late 50% of the time, and aregoing to try and cut back on the amount of work he hasto do. Well, the case manager emailed me today and told me of's grade so far half-way through the 9-weeks.It's an F. He had a test he had to finish. The teacheragreed he could turn it in late, for full credit. Heturned it in and got 7 out of 47 right. It was anopen-note test!!! When asked why he did so poorly, hetold the case manager he didn't want to do it. Then hesaid he didn't understand what to do. So the casemanager is at a loss of what to do. I don't know whatto do.I keep getting all these bad things about him heapedup on me. He wants to stay on an advanced studiesdiploma. I asked him in the IEP meeting if he'd rathergo down to standard and ease his work load. He said hedid not. (The special ed rep had said at one point,"Is this doable? Can he do this? I am a realist andbelieve in being 'real'!") So, I don't know what we are going to do. I hope theless work will help him. But I think he's checked outfor the year.The case manager has been the best I've ever had for. He knows his stuff and makes me think he haslived with for the past 15 years and knows himas well as I do. So, if he's frustrated.... I justdon't know what to do and am about to throw in thetowel....AAAHHH!So I am feeling your frustration! We need to gettogether. You are only an 8 hour drive! LOL! -Melinda H

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.6/1404 - Release Date: 4/29/2008 6:27 PM

[Guest guest]

Roxanna,

If she is a private professional, then I think I would find another

one! LOL! Sounds like she just doesn't want to be " bother " with what

really needs to be done to help your child! If she admits, she see

these things, then is not willing to do something about them...then

she's not very professional at all! That's just my take on it! I'd

dump her in a heart beat! That's just me!

Connie

> >

> > I have had a lot of things to deal with lately with my kids.

IEPs

> stacked up, evaluations, achievement testing, etc. I went to an

IEP

> for my 19 yo and there were a number of things that were never

> addressed or done at all from the last IEP. I noticed that these

> items were not written on the new IEP. So the sped teacher tells

> me, " There is just no nice way to say this...it just wasn't

done. " I

> was like, " uh....okay..... " and she continues to say that because

it

> wasn't done, she didn't write it on the new IEP. I almost wanted

to

> LOL at the " logic " . And even so, he's 19 yo now and I am only

there

> because he refuses to go on his own. The fact that he can't

attend

> his own meeting is not a problem for them that it is for me. <g>

> But again, this is how it went and I really left discouraged

about

> the whole process. I mean, knowing the laws means nothing if you

> don't have people willing to fulfill their duties as written in

the

> IEP. And more so, we have a ds who would never agree to another

> therapy in his life. He was really abused by the system and I

don't

> blame him. But really this leaves a basically useless IEP. Oh

> well.

> >

> > So fast forward to today when I took my 11 yo (hfa) to another

eval

> with the OT. He is having his 3 year MFE done and we've been

going

> to this place down the street for OT and ST eval's since we e-

> school. I have filled out pages of forms asking me all sorts of

> questions and I even got excited as I always do because they are

> asking me questions about things that are serious problems for my

> kid! So I feel, " Hey! I'm in the right place! Alright! " And he

> has several days of testing and each time, OT tells me he is all

over

> the place, his writing sucks, he does really eat plastic, and on

and

> on. So again, I feel as if I am in the right place and perhaps we

> will get him some help at long last for a number of problems he

has.

> >

> > Today, though, she finished his eval and she told me that he

won't

> be qualifying for OT. I was really taken off guard because I had

> felt all along that she was really understanding my kid. I had

told

> her things in advance as well...such as that he does have great

fine

> motor but his stamina, motor planning and spacing is

> terrible....things like that. So then she starts telling me that

his

> handwriting is awful but since he has all the mechanics down, she

has

> determined that his handwriting is a problem of his own " personal

> responsibility. " I need to hold him accountable and he will write

> just fine. She repeated this part about 5 times in a row to me so

I

> can only imagine the look on my face and my inability to open my

> mouth because I was going to throw up on the spot caused her to

think

> I did not comprehend what she was saying. I would just say, " Oh

> really " and " I see. " So she'd say it again. And I would just get

> that " ready to vomit " look. And she'd repeat. Now what is the

> point?!?!?! lol

> >

> > She said his chewing on non-food items was not " educationally

> relevant. " Well, she said that several times about several areas

of

> concern that he has major issues in. I told her that the IDEA is

not

> only about " educationally relevant " but he also needs to learn

basic

> living skills so he can become an independent adult some day -

that

> this is in the IDEA. She said, " Yes, I know but well, we'll see

how

> far that goes... " as if it was just an idea and not part of the

law.

> Like I made it up on the spot or something. lol. Let's see how

far

> you get arguing that lame piece of the law, chickie. lol. Argh!

> And she would make suggestions of things I could do at home with

him

> like buy him a large therapy ball to bounce on. I actually

> sputtered, " Did you remember that he eats plastic? " and my ds is

> standing right there and he says, " Well, uhm, actually I don't

> swallow. " And she looks as if I am making it up that he would eat

a

> hole in the therapy ball and that we haven't already gone through

a

> dozen over the years before giving up on them entirely. I just

felt

> so misunderstood all of the sudden when I had felt understood

> earlier. How can it change so fast?

> >

> > Longer story longer, she said she would write up a sensory diet

for

> us. For instance, she is going to list " crunchy foods " for us to

> feed him so he will chew on real food instead of plastic or

paper.

> When I was telling my dh about this conversation, he got

exasperated

> at this point and said, " Do these people think we have never

tried

> the obvious? Do they think we don't know what crunchy foods are? "

> LOL. But that was not even on my mind at the time of the

> conversation. Instead, I was thinking, " Did she think I was lying

> when I said he doesn't eat anything but bread products? " It isn't

> like we can go get a bushel of carrots and a bag of pretzels and

let

> him snack away with some dip. I WISH IT WERE SO SIMPLE!!!!! And

if

> it were that simple, we wouldn't be seeing an OT for an eval,

now,

> would we? ARGH!!

> >

> > I just was so frustrated afterwards. After dealing with

everything

> else, with my older ds's stuff and then having to school my 11 yo

at

> home and now this...I just wanted to scream. I sometimes lose

faith

> that the system does anything worthwhile except regurgitate crap.

I

> feel like there are people out there making money off my kids for

> nothing more than saying they can't help them - which I could

have

> stayed home and not bothered! What is the point? Instead of going

> to college to get a degree in " I can't help you with anything on

this

> list " , I was drafted into the " be an autism mommy " army. It's a

> difference between being the one pooped on and the pooper.

> >

> > In dealing with and teaching my 11 yo - who is hyper,

inattentive

> and impulsive - I just really struggle each day to stay sane and

keep

> my sense of humor. She even commented on how hard it was to test

> him, he was all over, touching everything, hard to keep on task,

> etc. But now she said she can't help with any of that. It is just

> not possible. This is just how it is and I need to get used to

it.

> (duh, he's my kid, was I planning to trade him in for a nicer

model?

> lol, yes at this point I am getting sarcastic and rude in my

> mind....) So then I felt that today I just lost the humor with

this

> OT. She said she was " so sorry to have to say all of this " with a

> painted on sad face. And I realized I must have looked as

depressed

> as I felt. Where do you go for help when there is nobody who will

or

> can help? Of course, she determined that she cannot do anything

to

> help him but that I should take him to a doc and get him some

meds.

> That is the only thing that can help him.

> >

> > :::::banging head into cyber wall:::::

> >

> > So, that did not go well. lol. Can we wait until we get the

> official report? And will Roxanna stay sane during the MFE

meeting

> when discussing this report? Stay tuned....lol.

> >

> > I will try to recharge. There are just times that a person

takes

> for so long and there is one too many problems in a row. KWIM?

> >

> > Roxanna

> > Autism Happens

> >

>

>

>

>

>

>

> --------------------------------------------------------------------

----------

>

>

> No virus found in this incoming message.

> Checked by AVG.

> Version: 7.5.524 / Virus Database: 269.23.6/1404 - Release Date:

4/29/2008 6:27 PM

>

[Guest guest]

Hey, it sound like you deserve the right to rant for good reason,

lady!

> I have always added and corrected and argued when I feel strongly

about something. One year, my older ds had his MFE and I think the

School psych had to re-write it 5 times before I agreed to sign. One

time, they added what I wanted but wrote it as, " Parent states

that... " as if it wasn't true and they put it in to humor me (which

is probably exactly what they were doing!) So I had that taken out.

You know, I argued that if I can prove it and have data to back it

up, then it's not just a parent crazily insisting that we put this in

the MFE. And then once it was all done and I signed off on it, I

wrote and requested an outside IEE. lol. I wasn't trying to be a

PIA but there were some major problems going on, long story there.

It is just funny now to say what happened - now that I am not trying

to strangle anyone...lol...

>

<grin> Good for you!

> My 11 yo had his last MFE and the OT at school said the basic same

thing at the time - a whole lecture on " personal responsibility "

instead of a real report listing the OT issues. I actually did not

argue it at the time because my older ds was having a major crisis at

school and I could not deal with it all at once. Plus the OT at the

school was not so great and I knew that arguing for services meant

getting services from an uninspired person. So I decided not to do

this. Oh yeah, I spent the next 2 1/2 years listening to teachers

complain about his handwriting, his fidgeting, his inattention, yadda

yadda yadda. But when you have multiple kids with issues, you

sometimes have to juggle and can't go in for every single issue. I

have to pace myself. <g>

>

I can relate!

Wow, you just got to shake your head at some of the experiences that

occur. What irks me most of all is knowing that while this is

happening to parents like you, Roxanna, who have so much experience

and strength, this is also going on with newly diagnosed folks,

others without education skills, or those who simply are too timid to

challenge 'professionals'. Scary!

[Guest guest]

Rest up, then sharpen those fangs, Roxanna. Give it to 'em. But you're right. Who wants to do this time and time and time and time again? Wouldn't you think they'd learn after a while? Maybe *they* need an IEP? Go rent a good movie and make some popcorn. Take some time for you. Oh right. In between home schooling your kid. I forgot. Sorry. Well, do take care of yourself the best you can. I'm thinking of you.LizOn Apr 29, 2008, at 11:19 PM, Roxanna wrote:I have had a lot of things to deal with lately with my kids. IEPs stacked up, evaluations, achievement testing, etc. I went to an IEP for my 19 yo and there were a number of things that were never addressed or done at all from the last IEP. I noticed that these items were not written on the new IEP. So the sped teacher tells me, "There is just no nice way to say this...it just wasn't done."

[Guest guest]

She would not be my first choice after talking with her, that is for sure!

RoxannaAutism Happens

( ) Re: frustration occurs

Roxanna, If she is a private professional, then I think I would find another one! LOL! Sounds like she just doesn't want to be "bother" with what really needs to be done to help your child! If she admits, she see these things, then is not willing to do something about them...then she's not very professional at all! That's just my take on it! I'd dump her in a heart beat! That's just me! Connie> >> > I have had a lot of things to deal with lately with my kids. IEPs > stacked up, evaluations, achievement testing, etc. I went to an IEP > for my 19 yo and there were a number of things that were never > addressed or done at all from the last IEP. I noticed that these > items were not written on the new IEP. So the sped teacher tells > me, "There is just no nice way to say this...it just wasn't done." I > was like, "uh....okay....." and she continues to say that because it > wasn't done, she didn't write it on the new IEP. I almost wanted to > LOL at the "logic". And even so, he's 19 yo now and I am only there > because he refuses to go on his own. The fact that he can't attend > his own meeting is not a problem for them that it is for me. <g> > But again, this is how it went and I really left discouraged about > the whole process. I mean, knowing the laws means nothing if you > don't have people willing to fulfill their duties as written in the > IEP. And more so, we have a ds who would never agree to another > therapy in his life. He was really abused by the system and I don't > blame him. But really this leaves a basically useless IEP. Oh > well. > > > > So fast forward to today when I took my 11 yo (hfa) to another eval > with the OT. He is having his 3 year MFE done and we've been going > to this place down the street for OT and ST eval's since we e-> school. I have filled out pages of forms asking me all sorts of > questions and I even got excited as I always do because they are > asking me questions about things that are serious problems for my > kid! So I feel, "Hey! I'm in the right place! Alright!" And he > has several days of testing and each time, OT tells me he is all over > the place, his writing sucks, he does really eat plastic, and on and > on. So again, I feel as if I am in the right place and perhaps we > will get him some help at long last for a number of problems he has.> > > > Today, though, she finished his eval and she told me that he won't > be qualifying for OT. I was really taken off guard because I had > felt all along that she was really understanding my kid. I had told > her things in advance as well...such as that he does have great fine > motor but his stamina, motor planning and spacing is > terrible....things like that. So then she starts telling me that his > handwriting is awful but since he has all the mechanics down, she has > determined that his handwriting is a problem of his own "personal > responsibility." I need to hold him accountable and he will write > just fine. She repeated this part about 5 times in a row to me so I > can only imagine the look on my face and my inability to open my > mouth because I was going to throw up on the spot caused her to think > I did not comprehend what she was saying. I would just say, "Oh > really" and "I see." So she'd say it again. And I would just get > that "ready to vomit" look. And she'd repeat. Now what is the > point?!?!?! lol> > > > She said his chewing on non-food items was not "educationally > relevant." Well, she said that several times about several areas of > concern that he has major issues in. I told her that the IDEA is not > only about "educationally relevant" but he also needs to learn basic > living skills so he can become an independent adult some day - that > this is in the IDEA. She said, "Yes, I know but well, we'll see how > far that goes..." as if it was just an idea and not part of the law. > Like I made it up on the spot or something. lol. Let's see how far > you get arguing that lame piece of the law, chickie. lol. Argh! > And she would make suggestions of things I could do at home with him > like buy him a large therapy ball to bounce on. I actually > sputtered, "Did you remember that he eats plastic?" and my ds is > standing right there and he says, "Well, uhm, actually I don't > swallow." And she looks as if I am making it up that he would eat a > hole in the therapy ball and that we haven't already gone through a > dozen over the years before giving up on them entirely. I just felt > so misunderstood all of the sudden when I had felt understood > earlier. How can it change so fast?> > > > Longer story longer, she said she would write up a sensory diet for > us. For instance, she is going to list "crunchy foods" for us to > feed him so he will chew on real food instead of plastic or paper. > When I was telling my dh about this conversation, he got exasperated > at this point and said, "Do these people think we have never tried > the obvious? Do they think we don't know what crunchy foods are?" > LOL. But that was not even on my mind at the time of the > conversation. Instead, I was thinking, "Did she think I was lying > when I said he doesn't eat anything but bread products?" It isn't > like we can go get a bushel of carrots and a bag of pretzels and let > him snack away with some dip. I WISH IT WERE SO SIMPLE!!!!! And if > it were that simple, we wouldn't be seeing an OT for an eval, now, > would we? ARGH!!> > > > I just was so frustrated afterwards. After dealing with everything > else, with my older ds's stuff and then having to school my 11 yo at > home and now this...I just wanted to scream. I sometimes lose faith > that the system does anything worthwhile except regurgitate crap. I > feel like there are people out there making money off my kids for > nothing more than saying they can't help them - which I could have > stayed home and not bothered! What is the point? Instead of going > to college to get a degree in "I can't help you with anything on this > list", I was drafted into the "be an autism mommy" army. It's a > difference between being the one pooped on and the pooper. > > > > In dealing with and teaching my 11 yo - who is hyper, inattentive > and impulsive - I just really struggle each day to stay sane and keep > my sense of humor. She even commented on how hard it was to test > him, he was all over, touching everything, hard to keep on task, > etc. But now she said she can't help with any of that. It is just > not possible. This is just how it is and I need to get used to it. > (duh, he's my kid, was I planning to trade him in for a nicer model? > lol, yes at this point I am getting sarcastic and rude in my > mind....) So then I felt that today I just lost the humor with this > OT. She said she was "so sorry to have to say all of this" with a > painted on sad face. And I realized I must have looked as depressed > as I felt. Where do you go for help when there is nobody who will or > can help? Of course, she determined that she cannot do anything to > help him but that I should take him to a doc and get him some meds. > That is the only thing that can help him.> > > > :::::banging head into cyber wall:::::> > > > So, that did not go well. lol. Can we wait until we get the > official report? And will Roxanna stay sane during the MFE meeting > when discussing this report? Stay tuned....lol. > > > > I will try to recharge. There are just times that a person takes > for so long and there is one too many problems in a row. KWIM? > > > > Roxanna> > Autism Happens> >> > > > > > > --------------------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG. > Version: 7.5.524 / Virus Database: 269.23.6/1404 - Release Date: 4/29/2008 6:27 PM>

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.6/1404 - Release Date: 4/29/2008 6:27 PM

[Guest guest]

<quickly inserting pillow between Roxanna's head and the cyber wall>

Also, sending you a hug and a shot of tequila. You need it!

I hear your frustration and completely understand it. Not meaning to sound flip, but I read thru your post and half chuckled because nothing I read suprised me. I have become very cynical over the years, and I can't just say it is from handling my son's AS... it's just a general frustration with people not doing their job. There is the trend now that people just want to fill out the forms and delegate whatever they can to whomever they can. No one is held accountable for outcomes. Excuses are a dime a dozen and no one takes responsibility.

How you kept your tongue in either situation is beyond me. For your older son, I would have asked if everyone on the team received their paychecks even though the job was obviously not done.

I'm still shaking my head over my IEP mtg for my youngest.... we hashed that out here a couple weeks ago... the boy with the poor fine motor who scored low on the OT eval but didn't qualify for OT. I knew darn well going into that whole assessment process that it would be a waste of time, and it was.

Speaking freely...... I am a PT. I absolutely loved my work. Gave 200% of myself to my patients and their families. Over the years, I saw a trend starting with the PT students that came in for their clinical training. When I went to school, college was grueling. All work, study and very little play. I noticed a huge change in the students I had. Their schooling was practically being served to them on a silver platter.... their schedules were very mild, they were handed their notes by a note taking service, I failed 2 students on their clinical performance only to have their coordinators from the school pass them... one because the poor fellow had a dog with a bladder problem which made him miss time in the clinic and the other student because she was attending a state school on a state scholarship because she had been a state worker. So, their clinical and interpersonal

skills were horrendous and there was poor carryover of what book knowledge they had..... but they passed.

I also saw these changes with my fellow workers. PT, OT and Speech are all hands on professions. At some point, ya gotta get your hands dirty! You actually have to get up off your backside, put your hands on the patient and work with them! I can't tell you how aggravating it was for me to see therapists treat from behind the desk... They'd call instructions out to the patient or direct the assistant or aide to complete a task. How many times would I have a home patient whose OT never addressed bathroom tranfers or kitchen functioning with them? For my early years working, team approach was the emphasis. Each discipline worked together for the patient's sake. Somewhere along the line, that disappeared and it turned into a dog-eat-dog world.

I don't mean to pick on my fellow therapists only. I saw the same thing everywhere. Doctors, nurses, facilities..... even in the non-medical world... just try and find someone to answer your questions in a store these days. Everyone wants more and more money for the least amount of work they can do.... and the really lousey thing is that it's become acceptable.

It took over 6 months to get my son's Child Team Study done... "Oh well, we had your wrong phone number."

AS son misses school due to illness and stresses out having meltdown trying to catch up once back in school - School's response is for him to be removed from school and can't return until cleared by pscyh. Oh and sorry... can't give him his work to do at home while he's out because we don't want to add to the stress........ thus adding to son's stress...

Son goes in for Kindergarten screening, it's a busy distracting room, they grade him on the wrong age chart, don't realize he's already reading - "Oh, well. All we can suggest is that you take him home and love him."

In one school, son received Speech 2 times a wk, change schools.. "Oh no. He's fine! He doesn't need Speech at all!" Next year, new school -"Oh, his speech is very problematic! Needs speech!"

Too numerous to list... number of times dr offices submit incorrect billing and expect me to just pay instead.

Husband seriously ill, prepped for major invasive test, lays waiting and waiting and waiting to be taken down - "OOPS! Sorry! They have you scheduled for TOMORROW! hahaha!"

and the list could go on and on.....

I know people aren't perfect. Mistakes are made, but anymore it's as if we need to expect the least from people. I seem to go into every situation now prepared that I'm going to have to be the one who takes care of all the loose ends. I'm prepared that I'm going to have to spell things out in great detail and expect that I am going to get sub-par response. Whether it's seeking special services for a child, hoping to get billing straightened out or ordering lunch meat at the deli.

Sorry, Roxanna, I didn't mean to turn your post into a personal rant! You asked "Where do you go for help when there's nobody who can or will help?" The answer I have found is that you turn to yourself. Educate yourself enough and more than likely your common sense and personal drive can see you thru. Unfortunately, there are times when it's completely out of your hands and you have to put it in the Lord's hands, find a cutthroat lawyer or just let it go.

Mims

From: Roxanna <madideas@...>Subject: ( ) frustration occurs"Asperger" < >Date: Wednesday, April 30, 2008, 3:19 AM

I have had a lot of things to deal with lately with my kids. IEPs stacked up, evaluations, achievement testing, etc. I went to an IEP for my 19 yo and there were a number of things that were never addressed or done at all from the last IEP. I noticed that these items were not written on the new IEP. So the sped teacher tells me, "There is just no nice way to say this...it just wasn't done." I was like, "uh....okay. ...." and she continues to say that because it wasn't done, she didn't write it on the new IEP. I almost wanted to LOL at the "logic". And even so, he's 19 yo now and I am only there because he refuses to go on his own. The fact that he can't attend his own meeting is not a problem for them that it is for me. <g> But again, this is how it went and I really left discouraged about the whole process. I mean, knowing the laws means

nothing if you don't have people willing to fulfill their duties as written in the IEP. And more so, we have a ds who would never agree to another therapy in his life. He was really abused by the system and I don't blame him. But really this leaves a basically useless IEP. Oh well.

So fast forward to today when I took my 11 yo (hfa) to another eval with the OT. He is having his 3 year MFE done and we've been going to this place down the street for OT and ST eval's since we e-school. I have filled out pages of forms asking me all sorts of questions and I even got excited as I always do because they are asking me questions about things that are serious problems for my kid! So I feel, "Hey! I'm in the right place! Alright!" And he has several days of testing and each time, OT tells me he is all over the place, his writing sucks, he does really eat plastic, and on and on. So again, I feel as if I am in the right place and perhaps we will get him some help at long last for a number of problems he has.

Today, though, she finished his eval and she told me that he won't be qualifying for OT. I was really taken off guard because I had felt all along that she was really understanding my kid. I had told her things in advance as well...such as that he does have great fine motor but his stamina, motor planning and spacing is terrible.... things like that. So then she starts telling me that his handwriting is awful but since he has all the mechanics down, she has determined that his handwriting is a problem of his own "personal responsibility. " I need to hold him accountable and he will write just fine. She repeated this part about 5 times in a row to me so I can only imagine the look on my face and my inability to open my mouth because I was going to throw up on the spot caused her to think I did not comprehend what she was saying. I would just say, "Oh really" and "I

see." So she'd say it again. And I would just get that "ready to vomit" look. And she'd repeat. Now what is the point?!?!?! lol

She said his chewing on non-food items was not "educationally relevant." Well, she said that several times about several areas of concern that he has major issues in. I told her that the IDEA is not only about "educationally relevant" but he also needs to learn basic living skills so he can become an independent adult some day - that this is in the IDEA. She said, "Yes, I know but well, we'll see how far that goes..." as if it was just an idea and not part of the law. Like I made it up on the spot or something. lol. Let's see how far you get arguing that lame piece of the law, chickie. lol. Argh! And she would make suggestions of things I could do at home with him like buy him a large therapy ball to bounce on. I actually sputtered, "Did you remember that he eats plastic?" and my ds is standing right there and he says, "Well, uhm, actually I don't

swallow." And she looks as if I am making it up that he would eat a hole in the therapy ball and that we haven't already gone through a dozen over the years before giving up on them entirely. I just felt so misunderstood all of the sudden when I had felt understood earlier. How can it change so fast?

Longer story longer, she said she would write up a sensory diet for us. For instance, she is going to list "crunchy foods" for us to feed him so he will chew on real food instead of plastic or paper. When I was telling my dh about this conversation, he got exasperated at this point and said, "Do these people think we have never tried the obvious? Do they think we don't know what crunchy foods are?" LOL. But that was not even on my mind at the time of the conversation. Instead, I was thinking, "Did she think I was lying when I said he doesn't eat anything but bread products?" It isn't like we can go get a bushel of carrots and a bag of pretzels and let him snack away with some dip. I WISH IT WERE SO SIMPLE!!!!! And if it were that simple, we wouldn't be seeing an OT for an eval, now, would we? ARGH!!

I just was so frustrated afterwards. After dealing with everything else, with my older ds's stuff and then having to school my 11 yo at home and now this...I just wanted to scream. I sometimes lose faith that the system does anything worthwhile except regurgitate crap. I feel like there are people out there making money off my kids for nothing more than saying they can't help them - which I could have stayed home and not bothered! What is the point? Instead of going to college to get a degree in "I can't help you with anything on this list", I was drafted into the "be an autism mommy" army. It's a difference between being the one pooped on and the pooper.

In dealing with and teaching my 11 yo - who is hyper, inattentive and impulsive - I just really struggle each day to stay sane and keep my sense of humor. She even commented on how hard it was to test him, he was all over, touching everything, hard to keep on task, etc. But now she said she can't help with any of that. It is just not possible. This is just how it is and I need to get used to it. (duh, he's my kid, was I planning to trade him in for a nicer model? lol, yes at this point I am getting sarcastic and rude in my mind....) So then I felt that today I just lost the humor with this OT. She said she was "so sorry to have to say all of this" with a painted on sad face. And I realized I must have looked as depressed as I felt. Where do you go for help when there is nobody who will or can help? Of course, she determined that she cannot

do anything to help him but that I should take him to a doc and get him some meds. That is the only thing that can help him.

:::::banging head into cyber wall:::::

So, that did not go well. lol. Can we wait until we get the official report? And will Roxanna stay sane during the MFE meeting when discussing this report? Stay tuned....lol.

I will try to recharge. There are just times that a person takes for so long and there is one too many problems in a row. KWIM?

RoxannaAutism Happens

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hello! Earth to therapist! And even worse, it isn't her place to make these determinations. She needs to write an accurate report and then the "TEAM" discusses the results and decides if these issues are "Educationally relevant" or if he needs OT to address the problems listed. I think the whole idea of having these therapists pre-determine whether problems are relevant or not defeats the purpose of having an evaluation in the first place! Don't just list the problems you feel will pass inspection at an IEP meeting! And yet, that is what will happen.

Roxanna,

This is part of the whole issue. They work the system from their side. Just as I had experienced with my son's IEP, they discuss all of this beforehand amongst themselves. That way they can present in unison at the meeting and they can write up their reports to support their side. So, it does come down to You Vs Them.

Mims

From: Roxanna <madideas@...>Subject: Re: ( ) Re: frustration occurs Date: Wednesday, April 30, 2008, 12:47 PM

These are new IEP team people that I will be dealing with so I am not sure if they realize that I will bring in my own list to add to the MFE. We had an IEP meeting already for a temporary IEP until the MFE is done and I emailed them a few pages of my "thoughts". So I do think that they are getting a clue as to the extent of my "involvement" in the process. The school, in the past, already knew I would be a "difficult" parent. (i.e. read and contribute to the process...)

I have always added and corrected and argued when I feel strongly about something. One year, my older ds had his MFE and I think the School psych had to re-write it 5 times before I agreed to sign. One time, they added what I wanted but wrote it as, "Parent states that..." as if it wasn't true and they put it in to humor me (which is probably exactly what they were doing!) So I had that taken out. You know, I argued that if I can prove it and have data to back it up, then it's not just a parent crazily insisting that we put this in the MFE. And then once it was all done and I signed off on it, I wrote and requested an outside IEE. lol. I wasn't trying to be a PIA but there were some major problems going on, long story there. It is just funny now to say what happened - now that I am not trying to strangle anyone...lol. ..

My 11 yo had his last MFE and the OT at school said the basic same thing at the time - a whole lecture on "personal responsibility" instead of a real report listing the OT issues. I actually did not argue it at the time because my older ds was having a major crisis at school and I could not deal with it all at once. Plus the OT at the school was not so great and I knew that arguing for services meant getting services from an uninspired person. So I decided not to do this. Oh yeah, I spent the next 2 1/2 years listening to teachers complain about his handwriting, his fidgeting, his inattention, yadda yadda yadda. But when you have multiple kids with issues, you sometimes have to juggle and can't go in for every single issue. I have to pace myself. <g>

Now the older one is doing well in school so I have time to address these things with the 11 yo. Plus, since I am his teacher every day, these problems affect ME. It wasn't that I didn't care about the problems if they affected other teachers - I always did. But you know, it seemed somehow ridiculous that I would have to fight for help alone to help them when "they" are the ones I have to fight to get the help from. So I figured having a number of teachers prepared to swear that he really needs help was a good thing. <g> Why move the mountain alone, right!

Anyway, now I am "the teacher" and these problems are so major and interrupt his ability to learn. So it is even more important to me to address them now and better, I thought, because we did not have to deal with the lame school OT. I was not expecting this one. ugh ugh ugh. I mean, I swear - I took him to his first appt. wearing his little brother's shirt because he had no short sleeve shirts left. He had eaten holes in all his clothes. He had one pair of sweat pants left - he picks at the seams until they pull out, then he chews the fabric and threads. And the pants he had had a spot on them with teeth marks that did not even come out in the wash - they were permanent imprints in the fabric.

So he literally had nothing to wear. But you tell people this and it's like they think you are exaggerating or something. She obviously didn't think it was that bad? I don't know what she was thinking but I was totally serious. And further, I do not want to have a conversation with someone as to whether not having any clothes without chew holes is an educationally relevant problem or not! It was not a problem to her because he is homeschooled! I couldn't believe it!!! Hello! Earth to therapist! And even worse, it isn't her place to make these determinations. She needs to write an accurate report and then the "TEAM" discusses the results and decides if these issues are "Educationally relevant" or if he needs OT to address the problems listed. I think the whole idea of having these therapists pre-determine whether problems are relevant or not

defeats the purpose of having an evaluation in the first place! Don't just list the problems you feel will pass inspection at an IEP meeting! And yet, that is what will happen.

Well, I am still ranting!! I definitely will attend the MFE meeting with my own list to discuss and even add my own follow up letter(s) on these things. I told my dh he will have to come to the meeting so he can make sure I stay seated and don't start yelling. <g> I mean, these new people on the IEP team may understand and work with me on things. I feel like they will and I will assume that they will unless proven otherwise! I just didn't expect this conversation with the OT yesterday. And the more I thought about it, the more depressing it was!

RoxannaAutism Happens

( ) Re: frustration occurs

Ah, Roxanna, sorry to hear that you have a lot on your plate at this time. It sounds extremely frustrating and tiresome... try and keep your chin up.Re: IPP's (IEP's), lol, I remember the first time at my son's school that I went in and an IPP was printed out all neat and proper and ready for me to sign. I said, "Um, I think I'll take this home first and give myself a chance to take it all in". Well, you would have thought by the look on the face of admin. that I was from another planet! Honestly, I do not sign anything without reading it thoroughly, let alone my child's education plan. So, sure enough, as I read through, I found many gaps and added my own notes and goals to the mix. (Hee Hee) I photo-copy everything to check back upon it and then request a copy from the school as well to make sure. I don't believe I've ever once signed an IPP without first adding to it. Can you do the same,

Roxanna... Refuse to sign initially and then add to the agenda as you see fit? Good-luck and I hope they don't pounce on you if you decide to insist! ; )Velvet>> I have had a lot of things to deal with lately with my kids. IEPs stacked up, evaluations, achievement testing, etc. I went to an IEP for my 19 yo and there were a number of things that were never addressed or done at all from the last IEP. I noticed that these items were not written on the new IEP. So the sped teacher tells me, "There is just no nice way to say this...it just wasn't done." I was like, "uh....okay. ...." and she continues to say that because it wasn't done, she didn't write it on the new IEP. I almost wanted to LOL at the "logic".

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.6/1404 - Release Date: 4/29/2008 6:27 PM

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

> Today, though, she finished his eval and she told me that he won't

be qualifying for OT. I was really taken off guard because I had felt

all along that she was really understanding my kid. I had told her

things in advance as well...such as that he does have great fine motor

but his stamina, motor planning and spacing is terrible....things like

that. So then she starts telling me that his handwriting is awful but

since he has all the mechanics down, she has determined that his

handwriting is a problem of his own " personal responsibility. "

Hi Roxanna. Who knows, it may not be the same thing, but my 13yo AS

son also has good fine motor skills but avoids using his hands,

including writing. It turned out that he has several years delay, in

the severe deficit range, for manual dexterity and strength (which is

not the same thing as fine motor skills). We ran into the same

thing--people seeing that he knew the mechanics of things and assuming

he was just unmotivated or defiant. He has only been doing OT a few

weeks, but I'm already seeing signs of progress (not that he still

doesn't have a ways to go).

Ruth

[Guest guest]

Very well said! I agree, it's hard to get people in general to do the

job they are being paid to perform! Just to hear them complain about

not making enough money! Gee whiz, if you would just do the job you're

being paid to do now, then perhaps you would make more money.

You're also right, the only place to go for help is yourself! Learn all

you can, do all you can, then turn the rest over to the Lord & let Him

handle it!

Hang in there!

Connie

[Guest guest]

>

> These are new IEP team people that I will be dealing with so I am not sure if

they realize

that I will bring in my own list to add to the MFE. We had an IEP meeting

already for a

temporary IEP until the MFE is done and I emailed them a few pages of my

" thoughts " . So I

do think that they are getting a clue as to the extent of my " involvement " in

the process. The

school, in the past, already knew I would be a " difficult " parent. (i.e. read

and contribute to

the process...)

> >>>>

Sometimes I don't know what's worse, if they WERE warned about me or if they

WEREN'T

warned about me when I moved from one school to another....

Jackie

Official Poster Child for Overinvolved Parents

[Guest guest]

That is pretty sad, Pam. And it's not like you will even know when or if he could be "weaned" from the aide to begin with. I mean, you can't predict when the time would be right if you wanted to do that to begin with.

What kind of ESY do you have planned for him? I am at a loss as to what to do with ESY this year.

RoxannaAutism Happens

Re: ( ) frustration occurs

Is it a full moon? I had Conor's IEP this week (first meeting of probably 10). He is transitioning to the middle school. Initially we discussed ESY. His case manager had emailed the LEA ahead of time to let them know what I was proposing for ESY so that we would have a clear answer, or at least someone who would approve or disapprove at the meeting. Well their plan was that the district would pay for the summer camp, if we wrote into the IEP that the 1:1 would be weaned after a 6-8 week initial settling period. I said "Excuse me. I feel like you are asking me to make a deal and I don't believe that is appropriate". Of course the LEA said she would need to go back and discuss this with higher ups. This is what I find depressing. The district puts it into the hands of the LEA and actually thinks I will fall for a plan like that. I feel bad for the families that fall for it.... Pam

Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.6/1404 - Release Date: 4/29/2008 6:27 PM

[Guest guest]

I did tell the team that I would only make a decision about the need for a 1:1 when they present me with solid data. Not sure that will ever happen. He will be attending a camp for 4 weeks. He has attended for the past two years. Pam :)Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

[Guest guest]

Hi...I didn't make myself clear in that email...My son has had a 1:1 since he was 4 years old. After a due process and allegations of abuse; it was part of the 45 page hearing agreement. The school district is trying to make a bargin with me about agreeing to LET GO of the 1:1 as he transitions over to the middle school. I am not in agreement with the reduction of services and I'm agreeing to review data that they take to support their idea of reducing services. Hope that is clear now. By the way, having a 1:1 is not all that it is cracked up to be...as they say "be careful what you wish for". Pam :)Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

[Guest guest]

Roxanna, they are planning a few visits. He will go over with his current resource teacher to visit a few classrooms. I did agree to review data with them after six to eight weeks. If there is any data kept that is....Pam :)Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

[Guest guest]

WOW---a 1 on 1...........we begged for that, even just for a few minutes of the day / each class period; I would NOT turn it down. My son appears and gets all the garbage of too smart but refussing to do it; capable but......................yaddayaddayadda!!!!...............I would take the one and one and not complain; it will only help the child! And, ensure they can get the assignments, understand what is going on, etc. Our son was begging for one / he needed the help, and we spent thousands; I would NOT turn down the help! The rest of us all fight to GET services!!! If you get 'em, honey, take 'em!!!! That is just my opinion, but one on one is amazing; it does not get any better than that!!!! And, you are not paying more than your taxes for it, right??? If you have to pay and private school, then I would say something else, but it public school, free to you and child, then why wait?? Ruthie Dolezal

From: ppanda65@...Date: Thu, 1 May 2008 07:08:29 -0400Subject: Re: ( ) frustration occurs

I did tell the team that I would only make a decision about the need for a 1:1 when they present me with solid data. Not sure that will ever happen. He will be attending a camp for 4 weeks. He has attended for the past two years. Pam

Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

[Guest guest]

Not all 1-1's are great at their jobs. And getting one means you are at the mercy of the whole process of who is at the top of the list for jobs and who wants the job. I have seen people lose wonderful 1-1's due to others with more time in wanting it and then new ones are not so great at it. RoxannaAutism Happens

Re: ( ) frustration occurs

I did tell the team that I would only make a decision about the need for a 1:1 when they present me with solid data. Not sure that will ever happen. He will be attending a camp for 4 weeks. He has attended for the past two years. Pam

Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.7/1408 - Release Date: 4/30/2008 6:10 PM

[Guest guest]

Pam, I would definitely NOT agree to peel off the 1-1 at a transition so big as middle school. There is so much unknown right now for Conor and how he will react, what he will need, how well the middle school people will work with him and you. It is definitely important to wait and see the data first. But you knew that!! I do hope transitioning over to middle school goes more smoothly for him. Have they been taking him over there on a regular basis this school year? That is one thing that they did for Reece that I feel was worthwhile. He went over there once a month to visit various classes or eat lunch in the cafeteria, join in PE class, etc. He seemed to enjoy it. And the idea of being at the middle school was not scary when school started up at all since he knew where things were and how to move around the place.

RoxannaAutism Happens

Re: ( ) frustration occurs

Hi...I didn't make myself clear in that email...My son has had a 1:1 since he was 4 years old. After a due process and allegations of abuse; it was part of the 45 page hearing agreement. The school district is trying to make a bargin with me about agreeing to LET GO of the 1:1 as he transitions over to the middle school. I am not in agreement with the reduction of services and I'm agreeing to review data that they take to support their idea of reducing services. Hope that is clear now. By the way, having a 1:1 is not all that it is cracked up to be...as they say "be careful what you wish for". Pam

Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.7/1408 - Release Date: 4/30/2008 6:10 PM

[Guest guest]

Middle school is where 1:1 are needed the most in my opinion. Lots of changing of classes, more children, differing schedules, harder work, expectations are changing... that is the time when my son was attending a special needs school and probably the only reason he is able to attend the regular high school now because the ratio at the sped school was 2:1.

On Thu, May 1, 2008 at 1:04 PM, Roxanna <madideas@...> wrote:

Pam, I would definitely NOT agree to peel off the 1-1 at a transition so big as middle school. There is so much unknown right now for Conor and how he will react, what he will need, how well the middle school people will work with him and you. It is definitely important to wait and see the data first. But you knew that!! I do hope transitioning over to middle school goes more smoothly for him. Have they been taking him over there on a regular basis this school year? That is one thing that they did for Reece that I feel was worthwhile. He went over there once a month to visit various classes or eat lunch in the cafeteria, join in PE class, etc. He seemed to enjoy it. And the idea of being at the middle school was not scary when school started up at all since he knew where things were and how to move around the place.

RoxannaAutism Happens

Re: ( ) frustration occurs

Hi...I didn't make myself clear in that email...My son has had a 1:1 since he was 4 years old. After a due process and allegations of abuse; it was part of the 45 page hearing agreement. The school district is trying to make a bargin with me about agreeing to LET GO of the 1:1 as he transitions over to the middle school. I am not in agreement with the reduction of services and I'm agreeing to review data that they take to support their idea of reducing services. Hope that is clear now. By the way, having a 1:1 is not all that it is cracked up to be...as they say " be careful what you wish for " . Pam

Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.7/1408 - Release Date: 4/30/2008 6:10 PM