Behavior Challenge Thread

[bookwormde]

Grace,

They are required to give you copies (as I said you might have to pay for the actual copying cost). They must give you everything in the file (emails are which are not part of the formal record do not have to be supplied, but as such not may not be referenced). My suspicion is that they do not want the let loose the record since other professionals might question their “competency”.

Every state had “additional” requirements beyond the base federal minimums so there are variations between states. You probably can not “force them to let you record the meeting by typically they will since it is generally considered “bad faith” not to.

It is a process, since your second request for the records was not fully honored some letter to the special education director (certified) is important to avoid “administrative deniability” (you have formally notified the district).

oh just wanted to ad , if the ED department does not have access to educational records how could they possibly do an evalation or develop IEPs (that is one of the funiest statments I have ever heard).

bookwormde

 

[carrie6466]

Hi Grace,

I'm in NY, so I'm sure there are different rules. But, I know this: when I requested my daughters complete records, I had to request the records from the District Clerk, not the Sp. Ed. Dept and not from the school building itself. They had, I believe, 5 days to acknowledge in writing, that they had recieved my request for records. They had 20 days to comply. That was it.

I also found out, again in NY, that I didn't have to make them aware that I was taping anything. I did make them aware that I was going to tape and they just said that was fine and they would tape the meeting as well. My advocate then informed me that that tape would become a part of my daughter's record, so if for some reason I needed their copy in the future, they would have to provide it.

I'm sure you know this, but you can go onto the Wright's law website and find out what the laws are in your state regarding things like timelines, etc. I have several books, as well, regarding IEP's and Special Ed. law if you need anything looked up. Just make sure every request is in writing. What I actually do now is I don't mail anything. I bring 2 copies of every request up to my district's special ed office and have them time and date stamp both of them as my 'receipt' of when they got them. Saves me the money on the return receipt mail and keeps me 'in their face' a bit, the side benefit is that I know the stuff actually got put into the right hands

Good luck with everything

 

[GraceLuvsWDW]

They have delayed the ARD. She stated it would be best to have the meeting after additional tests are done and I consult with everyone. But she says they must have it before Nov 4th.

I've been reading about subtest scatter. Anyone know anything about this? The composites the reference seem to mask some pretty large scatters in Memory, sensory-especially eye hand coordination and balance. In the WIATT II Memory Scale she had a 72.1 percentage point subscatter between recall of digits immediate and recall of digits delayed. There is also an 82 percentage point subscatter on the Developmental Test of Visual Perception between figure-ground (don't know what that is) and eye hand coordination, and also an 83 percentage point difference between spatial relations and visual closure.

If anyone knows if these scatters are clinically significant let me know. I am going to ask the Neuro on Monday.

The meeting today went well. I really tried to convince the Autism leader that they were missing certain key issues such as pragmatic language, auditory processing, and social skills. She agreed to conduct these additional tests:

Pragmatic Language Assessment by the SLP
Auditory Processing Assessment by the LSSP

She also agreed to come to my house to see the meltdowns and view the videotapes I have of the meltdowns after school. This is a good start, I believe, in them showing some good faith effort in making sure they have the big picture. She also agreed to come to the school to witness the morning separation and my dd's social fears upon entering the school such as shrinking and burying her face when people say hello.

I also sent my dd's file, incl district tests and all other tests ever done on my dd to an advocate. She is going to look it over and give me some advice. $60 per hour and she said it should only take about an hour.

That's all I've got. One day at a time. Thanks for all of your advice! BTW, Texas is a state where only one party has to agree to the audio recording. And they didn't mention my request so I guess they're ok with it.

 

[saveaquarter]

Walmart had to be crossed off the list of places where J can go alone. He went today, and called me completely overwhelmed and lost. He has a "little boy voice" that he uses when he's on the verge of a meltdown, and he was using that, in public, which he never does. Generally he can hold himself together. He managed to, more or less, and then got to the deli counter.

He asked for chicken, but was pointing to, and actually wanted turkey. The woman there snapped and told him they had no chicken, more rudely than necessary. He recovered, got our turkey, a few other meats, and then ordered maple ham. He was pointing to the maple ham. The clerk told him that they had no maple ham, he would have to take maple honey ham ($3 more per pound than what he wanted). He pointed again, said he wanted maple ham, not maple honey, and the woman said again, rudely (I was listening in, she was a b* and a half) they didn't have it, and sliced maple honey and handed it over.

I'm incredibly impressed with what happened next, though. He asked for a manager, explained what happened, spoke with the deli manager, explained again, all while still keeping himself together. I'm proud of him for getting through the ordeal, doing the right thing, and then getting out to the car without losing it. He even calmed himself enough to stop at the grocery store afterwards.

 

[pudge the fish]

ok I am a NT with a few ( ok lots of quirks) and Walmart makes me
ummm how shall we say ....
trying to think of the PC term here....

I think you all get the picture. the constant noise from different tv's that are all over the place -, 5 different radios playing -all doing different music or videos. along with the echos and the changes in lighting with bright to dim inside. one minute its all bright and I can see -the next it's all dim.
They are loud, crowded inside, most clerks are rude and I can barely stand going into a walmart. I need to get in and get OUT fast or I freak.
Weird cause I can handle Sams?

I am happy J made it out ok
I can imagine what a walmart must be like for someone who is a NV

 

[C&G'sMama]

Don't mind me. I just need to vent. I know we've talked about this before and I'll be fine tomorrow. Why do parents have to look at me disapprovingly when DS has a melt down? I picked the kids up at the Y tonight and he started screaming and kicking. I talked to him calmly but firmly. Two moms (both of whom I know) looked at me like I had the plague. I don't know if they know DS has Asperger's but it really doesn't matter. I got him out of the Y and got him to the car (DP was waiting in the car). I went back in the Y to get DD. I don't know why but it annoyed the heck out of me.

Okay, I'm done.

 

[bookwormde]

Grace

It is very common and again is a strong indicator of aspergers to have large discrepancies in all the test especially the IQ tests.

Beware the Auditory processing evaluation needs to be done by a clinician who is highly experienced, and have some familiarity the AS/HFA children and how to make it “ effective” for them, not someone who is “winging it” because someone thought it needed to be done. Have your Neuro set one up.

You have the correct perspective one day at a time.

Saveaquarter,

Every day is still a leaning experience for us aspies, good for him and he will have more skills next time so I would not worry about “protecting him”, your support and understanding is what he needs most (just do not send him on multiple “missions” like this in too short a time frame).

C&G’sMama,

Yes it is annoying; if I already have my methodology for decompressing my DS in my head I always add some comment about how society discriminates against people who have different neurological preferences. I am sure most do not really understand the reference but just putting the discrimination face on it tends to take them aback

bookwormde

 

[saveaquarter]

ok I am a NT with a few ( ok lots of quirks) and Walmart makes me
ummm how shall we say ....
trying to think of the PC term here....

I think you all get the picture. the constant noise from different tv's that are all over the place -, 5 different radios playing -all doing different music or videos. along with the echos and the changes in lighting with bright to dim inside. one minute its all bright and I can see -the next it's all dim.
They are loud, crowded inside, most clerks are rude and I can barely stand going into a walmart. I need to get in and get OUT fast or I freak.
Weird cause I can handle Sams?

I am happy J made it out ok
I can imagine what a walmart must be like for someone who is a NV

Thank you! I have problems with walmart myself, I'm amazed whenever he makes it through intact.

Saveaquarter,

Every day is still a leaning experience for us aspies, good for him and he will have more skills next time so I would not worry about “protecting him”, your support and understanding is what he needs most (just do not send him on multiple “missions” like this in too short a time frame).

Well, my big concern with J is that with all the physical stress on his body from his illness (MS, along with some other things), his coping skills are somewhat diminished. After a trying day like that, he's completely beat from trying to keep himself together. Moreso than protecting him from going out into these places, I want to save him from feeling as though he's wasted the day after trying to recover, as well as the seizures that stress causes.

 

[bookwormde]

Saveaquarter,

Yea I understand it he is not able to "shake it off" quickly.

bookwormde

 

[C&G'sMama]

So, I was outside doing yard work when I hear DS scream last night. He screams all the time. I figured it was another case of being asked to pick up a sock or some other menial task. DD comes out "Brother's eye is bleeding, mommy said to come in." Since the cut was so close to the eye and the bump near his temple we just wanted to make sure all was okay. And he said it hurt. He doesn't generally feel pain. We call the doctor and go to the ER. He has ice on it and is quite talkative in the car. He gets set up in a room and we are talking to him and all of the sudden he stops talking and turns over. He NEVER stops talking!! This concerned us so they did two neuro evals. He was fine. But man that whole "not talking" scared us. Under normal circumstances if he stopped talking we'd be ecstatic. He is fine. A couple of steri strips, a snoopy band aid and some animal crackers and he was good to go.

 

[GraceLuvsWDW]

C&G: Glad the ER visit wasn't too terribly awful. I definitely know what you mean by "not talking" scaring you! If my dd is not talking she is asleep, and that's the only 2 ways of being for her. Even yesterday, when she was sent to her room to regroup after lashing out at me, I overheard through her bedroom door her "scripting" what she heard in class yesterday: "Shading is when you fill in the bubbles. You cannot fill in the bubbles with the tip of your pencil. You must lay your pencil at an angle to the paper. That produces shading and fills in the bubble." I do not know if sending her to her room makes any lasting and understood conditioning response of preventing the lashings at me but at least she is learning to calm down. Perhaps that's all I can ask for at this time.

Saveaquarter: WalMart is a terrible ordeal for me as well. Chaos, confusion, noise and too many people! For an aspie, I can't even imagine the fortitude it took for J to make it through! Still looking forward to link to his blog.

Along those lines here's a link to an article on an adult Asperger's persepctive that I found interesting:

http://www.newyorker.com/reporting/2007/08/20/070820fa_fact_page?printable=true

The battle with the district wages on. Slowly. I met with the Neuro-psych and she only stated, after talking with the "Autism Leader" personally, that she would pull my dd out of that school immediately. She really wants me to put her in a school here called the Winston School, which is a school specializing in social skills, alternative teching methods, etc for these kids. The problem is the school is a 1 hour one way drive and $18000.00 per year so it's a bit out of the realm of doable now. She states that the proper foundation for my dd is imperative, and that I cannot keep her in a school which not only doesn't recognize her differences that prevent her from learning typically, but also do not recognize, nor want to recognize, her gifts and talents.

It's maddening to me that I cannot MAKE them see that extreme gifts plus extreme weaknesses does not equal average. It just DOESN'T. The advocate has not gotten back to me yet to see if she can help me. I await her input. However, I have a parent/teacher conference today and will attempt to "educate" the educator about my dd's differences. She told me she is attempting to "reward" my dd when her behavior is "normal" (ie no chewing, no preseverating, coloring in the lines, not drawing geometric shapes). Why does this bug me so much??? I guess it is depressing that their goal is to turn my dd into their "idea" of acceptable. While I want her to behave appropriately I also want to keep intact her precious gifts, which in my opinion are part of her personality. I suppose this is the current struggle with NV vs NT and celebrating NeuroDiversity vs "curing" autism. Their attempt to curb her eccentric behaviors and at the same time ignore her gifts and at the same time ignore her social emotional weaknesses can't be appropriate!

I alternate between feeling like a roaring mama bear telling them all exactly where to go and feeling hopeless and powerless against the overwhelming bureaucracy with a goal of conformity for all.

Hope all is well with everyone. While I'm always charting the "struggles" here I do have to add that my dd had perhaps one of her best days ever on Monday! A slight trouble in the afternoon but no "melting down" and no fighting me on bath, grooming or bed! I was so happy!

 

[stumom]

This is not the fun kind of roller coaster, this is the "where is it going to go next?" freaky kind. Some days I think I have the answer to what we need to do for my 5 y.o, and that everyone is on board and on the same page, and some days I feel like nobody knows/believes what I'm talking about. He was sent to the principal's office today for playing in a puddle. His shoes were not wet when I picked him up, so it wasn't that he was in it-what could he have been doing that was "bad" enough to be sent to the office? I wrote a note to the school psychologist about how sending him to the office was not helping him and damaging to his self esteem-he has been saying he is "stupid" and "bad" because (in his own words) "Me and --- are the only kids that EVER get sent to the principal's office, none of the other kids ever do." But even after we talked on the phone and she said she agreed, he was still sent. Would they have sent someone else to the principal's office for playing in the water? I'm so frustrated!!! Knowing him, he probably was absorbed in making something float. That's my vent for today.

 

[C&G'sMama]

Grace - Have you considered an education lawyer? It would be a hell of a lot cheaper than private school. And it would force the distict to do their job. Have you had any luck with the advocate? Keep us posted.

 

[GraceLuvsWDW]

Grace - Have you considered an education lawyer? It would be a hell of a lot cheaper than private school. And it would force the distict to do their job. Have you had any luck with the advocate? Keep us posted.

The advocate received my large package of info (btw my school binder has grown from 3 in to 5 in and bursting at the seams at that) and emailed me today promising to get back to me by Friday. They rescheduled the ARD to 10/29 at 3pm. How is her reg ed teacher going to make that meeting when the school bell lets out at 3:05? Be a little late?

The Neuro stated that I should get dd into "play therapy" to help with the anxieties that are rearing at night. I called around and found one that seems perfect! I talked to her for over an hour and really feel she "gets" the situation. So happy to have some help in this area, possibly.

On another note, had the parent/teacher conference yesterday. Oh my. God Bless this woman, she is a wonderful teacher I can tell but has no insight into my dd, not one iota! She mentioned my dd's "oddities" and said oh don't worry they all have funny little "phases". She told me she's giving dd gummy bears when she behaves. She said dd doesn't answer questions in class so when she does say something she gives her a gummy bear. If it wasn't so cute I'd be livid. But I realize her intent is purely in good faith so I had to explain a few things to her. She seems to "zone out" a bit and I could tell she's pretty "old school" when it comes to all that "psycho babble" stuff. I'm glad I can laugh at it or I might just cry!

On a positive note she's recognized dd's reading and math skills and said she's pulling her out to do one on one work with her. The others are in groups but she stated dd doesn't do well in the groups so she works one on one. She's going to be sending home accelerated math and reading work. She was laughing about my dd's writing work (not in a bad way). She's definitely noticed her "different" skills there. She showed me some of her work samples and then showed me other students' work so I could see the comparison. When the other kids were finishing sentences like "I love...puppies" dd's sentence was "I love... mini coopers." I guess she thinks my dd has an overly active imagination and can't comprehend that's it's due to any neurovariancy. Oh well, she's a sweet teacher and has good intentions. I'd much rather have her teaching my dd than someone critical or judgmental or someone who "thinks they know best".

She reports that so far dd has been extremely compliant, quiet, and not a problem at all. We discussed her problems in interpretation but the teacher wasn't very alarmed. You can tell she's pretty easy going and to be honest I really like her. I don't feel the lack of recognition of the true source of dd's issues is impairing her. Perhaps limiting the quality of learning that could be taking place but right now I am focused on the anxiety and this woman is truly nurturing and agreeable.

They pulled dd out of class today for the CELF. I'll have to wait to see the results.

Hope all is well with everyone.

 

[bookwormde]

Grace,

It sound like the teacher has a good heart (something that con not be learned) I would buy a copy of Attwood"s guide and "lend" it to her to read, you would be amazed the difference this can make.

bookwormde

 

[GraceLuvsWDW]

Hello everyone! An update on my situation:

Our ARD is Thursday. I am frantically preparing for that meeting. The advocate I hired was not a big help to me. She also took the position that the medical diagnosis doesn't constitute academic need and stated as long as she is performing on grade level they won't authorize services. I don't understand that at all? She told me to secure 504 modifications. I contacted another advocate who has instructed me not to sign off at the ARD, but to dispute their conclusion and get the IEE. I am going to ask them to state at the ARD why they do not see my dd's low subtest scores as constituting educational need. She also stated they have to consider functional need as well as academic need. Also, I've had a psychologist review the House Tree Person Test and is willing to state 1) it was not performed according to directions and 2) their interpretation was inappropriate. Also, there were questions on the RCMAS that were not answered which invalidates that test. I have the belief that dd did not understand those questions at all.

They administered the CELF and although I have not received those results they told me she "topped the charts".

Her teacher is much more help to us after our conference. She is sending daily notes home and noting her issues at school. I've gone to the school to observe dd with peers and have requested to volunteer in the classroom. DD does not mix with the peers at all, stays close to the teacher, but is showing a strong desire to please he teacher and responds well to prompts from her.

We started play therapy but it has been a failure so far. My dd is a master at deflection and all attempts by the therapist to engage dd in a discussion about feelings or school had been ignored completely. DD picked up a plastic child's chair and hit a neighbor child in the face with it (luckily no major injury) and is displaying lack of impulse control and emotional volitility. I was hoping the play therapist could make some progress on teaching her mechanisms for dealing with those feelings but if she doesn't acknowledge those feelings how can we teach her to deal with them?

We had a well visit at the pediatrician's office yesterday. Her regular PA wasn't available so they assigned another dr. Oh my, what a fiasco this was. I tried to tell them we should just reschedule but they insisted. Everything went well and I had high hopes for the visit when dd complied with the weight and height measurements. She also complied with the hearing and sight test. However, when they attempted the physical examination she lost it and started kicking and screaming. The dr called a nurse and the nurse attempted to hold dd down for the exam (holding her down always triggers the severest episodes). DD ended up kicking the nurse, dr and me (in my knee which is still sore) and the nurse became frazzled and yelled (a little too loudly) at dd that "you may NOT kick!" which just sent dd completely out of control. They were unable to complete the exam. Afterwards, curiously, my dd had no recollection of the severity of the event. I thought perhaps she went into "fight or flight" and wasn't able to control herself and perhaps the meltdown was so severe that she wasn't cognitively plugged in and therefore had no memory of it? Is this common?

I suppose I should contact the drs office today to see how they documented that meltdown, or would that even be relevant?

Anyway, I must say despite these lows, dd is doing quite well in school. She loves the teacher and I have to endure being "taught" by the teacher (she completely incarnates her teacher at home after school complete with the dialect-the teacher has a strong southern flair to her accent) from 3pm until she finally falls asleep. I look on the bright that this is a sign she likes school but it can become tiring to be followed around by a 6 year old "teacher" who rings the bell at me when I do something "wrong".

Hope all is well with everyone. I wish I could fly Bookwomde down here to help me with the ARD!!!!!

 

[bookwormde]

Grace

It is a shame that the advocate only goes by “experience” and not the regulations.

The new regs about Functional performance (as shown in the posting below), makes it very clear that social skills and broader functional performance an on equal footing with academic performance.

If you are starting play therapy it is important to let her “play” on her own terms initially with an adult engaging in a tangential supportive role followed by parallel play, and hopefully her seeing new “styles” in the parallel play and engaging in some fashion with the adult.

As for the therapist I am hopeful that she is skilled enough not to directly ask about your daughters feeling, but instead ask about “facts” (that your daughter is interested in) and gleans information about that how things are going from that. It is possible many years down the road before they build the type of relationship where your daughter will feel comfortable and competent enough to express her feeling directly but any attempts to do this now are at best counterproductive and at worst will “spoil” any deeper potential trust.

Yes it is common when "tramatic" meltdowns occur that no specific memory inmprints chemically (or at least it is not acessable now (my son has started to relate situations from early childhoold that at the time he had no memory of).

bookwormde

 

[GraceLuvsWDW]

I guess you're right about the play therapist. I might have pushed her to talk about the issues when it was too soon. She only asked things that were interjected within the play and they were benign things like "do you like school?" but they were direct enough that dd refused to engage in any discussion regarding feelings. So you think play therapy would eventually make progress? Or is it just as likely for me to make that progress when the time comes that she wants to talk about feelings?

I did make some progress with a "calm down corner". Put a ton of things there she likes like fuzzy blanket, comfy chair, headphones and calming music, pretty pictures, picture books and some sugar free gum-chewing calms her. She has gone to the calm down corner a lot lately and when she does something out of bounds-for instance a few days ago she threw the dice when we were playing a game and it wasn't her turn-I said go pick up the dice-and she said I want my calm down corner. I thought that was pretty good progress in helping her realize when she needs to calm down (of course I had to insist she pick up the dice first, then go to the calm down corner).

I'm going to make sure the "pattern of strengths and weaknesses", the functional issues, and the motor and visual processing issues are all discussed at the ARD. I requested the 504 Coordinator be present or meet with me before the ARD and they've refused both. I absolutely will not sign off without some assurances that supports will be in place. I just can't do that.

 

[GraceLuvsWDW]

Bookwormde, Am I able to cite or reference passages in "Complete Guide to Asperger's" without violating copyright law? How do I include info from that book in my response to the FIE? Or any other written report? Does anyone know?

Am I able to exclude all info which refers to anything they did not let me see pursuant to my FERPA request?

Would anyone be willing to look over my response to their report to tell me if I'm just way off base or if I'm missing anything important? It would have to be via private email or PM due to names.

Thanks!

 

[bookwormde]

Grace

It is my belief that all children who face the challenges of spectrum genetics should have a councilor of there own, and play therapy is one of the best ways to facilitate this, my son still does it as part of his counseling sessions.

Yes you can quote Attwood, it is a “clinical work” and you are not using it for “profit” so it should be considered a “fair use”. I use sections and paraphrase parts and then reference the page, paragraph etc.

Of course I would be happy to give it a look just PM it to me.

bookwormde