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LOL, that is the fun part to saying that. You know they don't keep data. Or there is someone frantically scrambling to write down a bunch of data real quick! LOL. I've requested it before to when they suggested changes and got the "oh crap" look as they say, "Well, uh...we will make copies of that data and send it home to you ...." (translation: we have no data but we will get someone to make it up really fast...)

ugh.

RoxannaAutism Happens

Re: ( ) frustration occurs

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 :)

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Oh man Roxanna, you are living my life......

with my autistic 12 year old I have tried to believe the "experts" over the years and now I don't anymore. My mother would be screaming "they are idiots, why are you believing anything they say, they can't actually change that!!!." I would be hopeful that possibly they knew something I didn't. I wanted to help my son so bad that I would try anything. Your experience has been ours. Now, with my aspie 8 year old, I don't have an IEP or anything. I don't want the idiots to have anything to do with my daughter. I think she is better off, safer, without them having anything to do with her.....We don't want any more of their "therapies."

I share in your frustration. I can't stand one more 20 year old ABA therapist who has never been married, never had kids, in my house, telling me stupid stuff we have tried for years. Now, I have decided that the only use of therapy for either kid is if they are with another adult who "gets them" and enjoys their company and can have fun with them. If my kids think it is fun, then it is worthwhile. If it isn't fun to them, it isn't worth it. We can do ABA in our sleep, token economy in our sleep, social skills, OT, etc. etc. etc. We have learned as much as we can and unfortunately we are the best to work with either one of my kids. I so badly want someone else to be able to step in and take over for 2 hours so I can get a break but there is no one that can. All I can get for help is someone to "play" with the kids. We are forced to home school my son and it is very difficult but for the school it was impossible. I see my daughter being homeschooled at some point too due to the sensory issues at our local middle school. Yesterday I was at the homeschool building, next to the middle school my son used to be at, and at lunch in a tiny, crowded outdoor area, all the kids were crowded in the hot son, eating lunch, while they played extremely loud rock music. I couldn't believe it. I asked the homeschool people if this happened often. They said yes, that they couldn't believe it either, and that they can't understand how the kids can deal with it. No WONDER my son couldn't cope!!! My daughter would never be able to tolerate that. Kids were running around crazy, crashing into each other, loud music, crowded, hot sun. My life has stopped, just like when we had small toddlers, babies, where we have to give them full attention most of the time. I thought that would end when they got bigger, that at least I would have the school hours to myself to work and take care of things. Now it is 24/7 again, but I realize this won't last forever..... at least I hope it won't.

Sorry for rambling. Roxanna's email just brought back all of those similar experiences we have had over the years. Being so hopeful that someone "gets it" and can help with it, wasting all that money on help, not actually getting any.......

( ) frustration occurs

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

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