Behavior Challenge Thread

[pudge the fish]

WOW! A gf bakery so awesome!
Best of luck
I would love to taste test I even have recipes I could send, if you are interested!

Grace- I am so sorry DD has to deal with all this nonsense
and probably doesn't help you much to see her have to deal with it.

My DD is NT but she is weird and I mean that in a nice way her issues with melt downs have basically stopped since we got her sugar levels- well level. She has some ocd issues - lining up things, marking deadlines on her calendar and checking over and over again. But then again I check the freezer door to see if it's shut 5, 6,7, 8 times

if I eat certain foods I go from nice to EVIL in maybe 2.0 seconds (if not faster) I think certain foods that we may sensitive be to can make chemical changes in our bodies and cause all kinds of issues.

my DD goes to a private school - she's been there since Pre-K
and she is not normal. other kids her age in other schools say she's strange cause she does so much homework.. or she's a nerd.. but she is learning to have some good come backs from kids who just "older" than they should be. Helps she has a brother who is 17, 6'2, 220lbs he is a good one for come backs
I don't mind my 11 DD acts like an 11 year old= Most of the girls in her class want to chase boys- real boys..They want to come over so they can stare at her brother. DD still has crushes on tv boys. ( Thank goodness

 

[C&G'sMama]

DDM - You know we all will give you our opinions (whether you ask us or not) I think starting a new thread is a great idea. You may get some people that don't wander over the Behavior Challenge Thread (can we call it BCT so we don't have to type so much (is there a whiney smiley)

Also, has anyone heard from our thread founder, Becky. If you're out there hope all is well.

-A

 

[saveaquarter]

Well, good news: I talked to Planning and Zoning and the Health Dept and it's all fine for me to start a bakery. So now I've got a ton of stuff to do.

...

SHould I start a new thread asking for input on the GF bakery, or will you all throw out your likes and dislikes on here? I want to do it with a fresh perspective.

And how cool it would be to have all of you local and helping me. But really, you already have. When I get to the point of being up and running and shipping stuff, who wants to be on the Test Panel? I need unbiased testers. I'm not kidding.

Oh my gosh, this is amazing. What a brilliant idea. It's so hard to find good food and treats that are gluten free, especially for my husband and I. He has so many sensitivities, and is so darn picky. The most recent cookies we've tried (Good Life, has anyone had them? Thanks to these cookies, the brand is banned in our home) are solid as rocks and weirdly dome shaped. J calls them hockey pucks!

May I volunteer my husband for the Test Panel? I don't think you can get more unbiased than an aspie. He has a whole slew of sensitivities and allergies, and I know there are more people out there just like him. I know he'd absolutely love to be involved!

 

[DisDreaminMom]

I made some banana bread yesterday and I accidentally put too much almond extract in it. I thought "dash" and my hand went "glug" and it was really amond-y. The texture was good (quinoa flour and tapioca!) but it was a little strong. My DD said she liked the texture of the wheat free ones (I do test batches- one GF and one regular).

My son, on the other hand, bites into bread and pauses for a second. Looks at me and screams, "This tastes HORRIBLE!"

So yes, what I'm getting at is that at this point, I trust the Aspie more than the NT.

Hey, did you all notice how many "views" we've had? CRAZY!!!

Now look for my new thread...I'm going to do that now...

And yeah, where is Becky???? (Hi Pudge!!!- I think I might have one of those giant 17 year olds some day. Well, C&C's Mama, Koolaidmoms and I!)

 

[DisDreaminMom]

Ruh-roh Shaggy, I don't want to be the thread killer! If it weren't for you meddling kids, I'd have gotten away with it, too....

Ok, so here are some recent observations:

1) Did you know that the woman who was raped in broad daylight by a teenager in Ohio was ASD? And did you know that according to the news coverage (which I found on LeftBrainRightBrain website but I forgot to copy the link) that they were able to catch the teenager (who looked like a football linebacker, by the way) because of the extremely descriptive victim. Apparently, this woman was just walking down the street and the guy grabs her and assaults her right there on the sidewalk. Only two passersby called 911. The one person who turned the car around got there too late and the guy started to run off.

And the victim's comment? "What kind of humans are we turning into?"

So that's why we look a little paranoid about our kids. Because I bet that woman didn't read the social clues that said, "This guy is up to no good and you'd better run or fight!" In her defense, they did not say what she did during the assault, so it's entirely conjecture on my part.

2)Did you read the Tribune article about the scientist who is prescribing the industrial waste chemical to ASD patients? He is located right here in my home town and several people have recommended I take my son to him. Can you imagine doing this to your child?

3) I also was sent an article from a relative about how they supposedly found a genetic marker for ASD where the uptake of oxytocin had been turned off, either by omission from the code or environmental means. So this relative was all ecstatic that they could now "FIX" my son. (Picture me vomiting in my mouth a little while reading her very cheery email.) For that matter, why don't I just stroll down to the barn and grab myself a bottle of oxytocin from the vet and shoot my kid up with that?

4)My son has now surpassed his sister in violin, even though he had his first lesson yesterday. The teacher kept asking how he knew what he knew. And she told him he played very well. Plus, he has figured out how to play on the piano with two hands on different chords with all fingers. Again, just by ear. New babysitter came this weekend. She played trumpet in school and said kids that played for years couldn't do the range that DS can on his cornet. So my question is, "Change what?"

But he still wets the bed and he can't button his pants. He gets in people's faces and asked a father at the music academy what happened to his (obviously damaged) eye. The man was very nice about it and answered all his very personal questions. I was half mortified, half intrigued. Then the man made him touch his glass eyeball and it was the funniest thing in the world to me to see how freaked out my son was (he shot his eye out playing with a gun as an 11 yr old- a great thing for my son to add to his mental list of Very Dangerous Things).

Hey Grace, how's life?

 

[GraceLuvsWDW]

Ruh-roh Shaggy, I don't want to be the thread killer!

Hey Grace, how's life?

Ok, I was alternating between crying and laughing when reading your post. Way to bring some comedy into some definitely not-so-comedic news!

Update:

DD hates takes the anti anxiety meds. It is a battle! Also, they are making her constantly hungry or I am assumming they make her tummy feel funny so she eats (kinda like what I did in pregnancy with my morning sickness-maybe that's why I gained so much weight during pregnancy!). I'm keeping an eye on it but it just may not be right for dd.

Yesterday in OT, the OT gave a facial reading quiz to dd. 14 Flashcards with facial expressions-want to know how many dd got right? FOUR. Four out of 14. Yikes. Need to work on that.

Here's something I need everyone's feedback on: So everyone knows what happened at the last Girl Scout meeting. And I've been rolling it over in my head that Girl Scouts just isn't the place for us. I've since found out that the troop has been getting together without us. It feels like we're just not wanted. Well, we're signed up to sell cookies at Wal-Mart on saturday with the girl and mom that spoke so rudely to dd. I am thinking about sending an email to the troop leader, explaining to her that we're really not a part of the troop and that we need to withdraw as dd doesn't feel comfortable in the meetings and is excluded in outside outings. I don't like the idea of raising money for a troop that views dd as too "strange" to invite to outside events. How do you feel about this? I just think the leader is making no effort to include dd (she acts as though dd isn't there when dd stims or acts inappropriately) and doesn't model to the troop the acceptance that Girl Scouts should represent.

How's the GF/CF bakery coming along? I'll hop on that other thread so I can stay posted. I had a friend whose ds was suspended for behavior while he is on meds for ADHD and has SPD. Advised her to call OCR and they jumped in and reversed the suspension. Not only that but she receives ST and OT now too! It was a nice win and I felt proud to have helped her. I wish I could be as successful in advocating for my own dd (the ds went to a different school). I have a meeting with an attorney (pro bono!) on Thursday.

I'm still reading the Bio Med book. Taking notes about proper diet, etc. I am going to try to implement the diet and espcially try to address possible leaky gut issues. DD has always had chonic stomach aches (has complained since she was verbal and they said she was acid reflux as a baby due to colic) so perhaps it is a yeast issue? She has very strong urine. Sorry if thats TMI. I'm trying to figure out what that could mean.

Anyway, that's all I've got. Dental procedure went fine. There's another thread that describes it all so check that out if you're interested.

 

[DisDreaminMom]

Grace, your Girl Scout leader should be taken out and whipped 40 times with a marshmallow roasting stick. I almost said "shot" but that sounds a little severe, so I edited. As a former GS leader, I say that you should call the Council that manages the GS's in your area and ask them if it's possible for them to find an alternative troop for your darling DD. Even if there isn't another one in your area, you owe it to everyone else to let as many people as possible know what a bunch of bi#$% you have had to deal with. And then consider making your own troop. Because you CAN start a troop, you know. Maybe a "special" troop. Because my motto is that if you can't join them, then kick their ***. And you might be surprised who would rather be in your troop...


So, I made GF Cheese Its. Oh My God. Yes, I did it. And they are crunchy. So good!!! But my son did not like the first batch I made, even though everyone was raving about them. So I asked him what was wrong with them. This is a child that can eat a box of Cheese Its in one day if allowed to. So he says, "They're the right size, but they don't have a hole in the middle. Put a hole in the middle". And we did. And now he likes them.

How do you guys get through waiting for things like sibling's lessons? My son is killing me about not being patient or even self entertaining. Ugggg....

 

[C&G'sMama]

Hey all.

Grace, while I'm sure it was difficult to have DD undergo anesthesia, I"m glad to hear all went well and they were able to get things taken care of.
DDM - Lessons, yes ughh. With my work schedule right now I can't get home on Wednesdays when DD has dance so DS has to go with. There is really no place to wait so it's in the Hall Way of the KofC hall or in the car. He's a wreck by the end of it.

So many more thoughts and other stuff I'd like to bounce off you guys. Work is insane (accounting, year end). Hopefully this weekend.

Stay well all.

 

[Schmeck]

Grace, your Girl Scout leader should be taken out and whipped 40 times with a marshmallow roasting stick. I almost said "shot" but that sounds a little severe, so I edited. As a former GS leader, I say that you should call the Council that manages the GS's in your area and ask them if it's possible for them to find an alternative troop for your darling DD. Even if there isn't another one in your area, you owe it to everyone else to let as many people as possible know what a bunch of bi#$% you have had to deal with. And then consider making your own troop. Because you CAN start a troop, you know. Maybe a "special" troop. Because my motto is that if you can't join them, then kick their ***. And you might be surprised who would rather be in your troop...

Two problems with this - if the GS troop did not file paperwork for any outside events (ie permission slips, etc) then they aren't really consider GS events, and council has no say over who gets invited and who doesn't. Also, at least in our council here in MA, you are not allowed to choose who is in your troop - enrollment occurs when school starts, and kids are divided by school into troops. That said, it does sound like council needs to be notified that the troop is not accomodating all scouts as it should. GSA has a written standard to include all girls, no matter of their race, religion, ability, home life, or financial situation.

 

[GraceLuvsWDW]

Two problems with this - if the GS troop did not file paperwork for any outside events (ie permission slips, etc) then they aren't really consider GS events, and council has no say over who gets invited and who doesn't. Also, at least in our council here in MA, you are not allowed to choose who is in your troop - enrollment occurs when school starts, and kids are divided by school into troops. That said, it does sound like council needs to be notified that the troop is not accomodating all scouts as it should. GSA has a written standard to include all girls, no matter of their race, religion, ability, home life, or financial situation.

I sent an email to leader. She responded that she had no idea anything was going on or that dd felt left out. I do understand the troop leader's view, as we all know it is difficult to know what to do when a child stims or acts nontypical. It is a shame that more people cannot use it as a "learning tool" but I understand that she doesn't know how to handle the non-typical behavior. She explained that she feels like if she tries to force dd into the group, or if she comments on the inappropriate stims, that she would be drawing attention to the issue. I very much understand her feelings on this, as I feel the same way during a meeting even as a mother who deals with it on a daily basis. I think I just need to face the facts, that Girl Scouts is not the best experience for dd as it is a "social group" and dd tends to hang back and not be "social". Give her a task and she does fine, but she only works parallel not as a part of the group, if you know what I mean. I told the leader I wasn't going to force dd to attend but that I would give her the option and we'll play it by ear. I am the troop treasurer and made that commitment so I feel I need to stick with that until the end of the year. We did get out of working the booths, however, as I just feel that wouldn't be a good experience for dd.

Another update: remember the pony pass they were supposed to give dd to use to see the counselor? dd had complained on a few occassions that she wasn't allowed to use it. Yesterday she told me the coach "yelled at her" (I am sure this is a sensory misunderstanding as the gym can be not acoustically friendly) and she wanted to see the counselor and they refused her request. You wanna see a mad mama??!!!!!

I emailed the principal, the teacher, the Sp Ed Coord, the 504 Coord, and the counselor last night and told them this was UNACCEPTABLE and that I wanted that PONY PASS in dd's possession AT ALL TIMES and honored AT ALL TIMES!!!!! I was nicer in the email but you get my drift. This am they ceremoneously gave it to her and then added the caveat that she "was not to use it during a lesson". Huh??? WHAT??? Do they think anxiety can be scheduled???? I'm seeing the attorney this evening. He has agreed to consult with me and represent me pro bono. Yay! He's read all of dd's evals and the school eval and seems very upset (but not surprised) by their report. I will see what he has to say tonight!

 

[Schmeck]

When you state 'honored at all times' you do mean when it is safe, right? For example, if it's during a fire drill, lockdown, etc, (times where anxiety for all is running high), there's a contingency plan in place, right? I'm only asking because we had a student that had an "unlimited pass" to use the restroom - well, we had a fire drill, we were all outside, and the student wanted to go back in and use the bathroom. Parent got so upset that we didn't escort the child back into the school, or take the student to another facility (of which there were none within walking distance) to accommodate. We ended up with a contingency plan that the parent would be called if the child requested a bathroom break while we waited outside for a fire drill.

 

[C&G'sMama]

DP and I talk about this. We spend so much time on DS, what about DD? So I am going to talk about her a little bit.

She has a mid-range hearing loss. The doctors compare it to having the hearing of a 65 year old man. She doesn’t wear hearing aids as they wouldn’t work for her. The first school she went to, a district school, for K, 1st and the first 2 months of 2nd had a special program for HofH kids. We had a CSE meeting with the district to try and get her services. But she didn’t qualify.

She had a 504 for testing and a sound field (which all of the classrooms at this school had) but the Teachers of the Deaf thought she would benefit from services. So we had the meeting. We were told by the teachers at her school that she would probably start having problems processing information as she got to grade 3 or 4. But “the district” said they couldn’t be proactive they could only provide services once she fell behind.

DP and I have our own version of Good Cop, Crazy Cop. We call it “good mom, crazy mom” Guess who “crazy mom” is? I sat in the meeting and said “fine I guess we’ll come back when she’s 12, hating school and pregnant!!! Then maybe you’ll give her services.” There’s a reason DP is the SAHM mom and goes to most meetings and I work.

Well, she’s in 4th grade now and guess what? She’s struggling academically. The fact that she has a 6yo brother that is at and in some areas, above, her level may not help.

We try to be very aware of her and that she doesn’t become lost because of the energy her brother takes. She and DP have girls’ days and I try to take time with her. She has her piano and Irish dance lessons and lots of friend (something her brother does not have).

Anyway we’ve had our concerns and DP had a meeting with the classroom teacher, the special ed teacher and a counselor (that one we didn’t know about until the meeting) the other day.

The teacher says DD is “perfect” and that’s the problem. She freezes up on tests and projects because she doesn’t want to fail. She knows how to spell words, we’ve asked her to spell them but then put them on the paper and “Black” is b-l-a-k and Happy is H-a-p-y. She doesn’t have an IEP but guess what, our school strives to do what they can for each child and are not as hemmed in as a traditional public school. So the teacher said she was going to try to switch up how she teaches.

This group of kids is different than last year’s so let’s try something else. And would we mind if she went to the counselor one on one for an hour a week? No, that would be awesome. We’ve been talking about trying to get her into some kind counseling or sibling group but it hasn’t happened.

So that’s our “other” child. Our beautiful, friendly little girl. And I was just wondering how other people’s “other” kids deal.

 

[bookwormde]

Graceluvswdw,

I am glad you are getting more help with your situation, I did not do more research when you said you had a advocate set, but if you are not getting the help you need just let me know and I will do what I can. If the attorney is reasonably knowledgeable one or 2 short letters about the multiple of IDEA violations and the abuse and damage being done to your child (CC to the state SPED director) to the district board will generally get things moving.

GS or BS can be a great thing if the troop leader “gets it” for some of our children, Get an extra copy of Attwood and loan it to her, Grace will not be the only child with Autism genetics that she will have if she does it for very long.

Schmeck,

Certainly a child should not go back inside during a fire alarm, safety is always first (a fire drill is quite a different situation). But the school needs to accommodate to the best of their capabilities even of it means finding a tree or transporting to another facility, just saying “wait” is not the answer.

bookwormde

 

[Schmeck]

Schmeck,

Certainly a child should not go back inside during a fire alarm, safety is always first (a fire drill is quite a different situation). But the school needs to accommodate to the best of their capabilities even of it means finding a tree or transporting to another facility, just saying “wait” is not the answer.

bookwormde

Vehicular transporting is illegal without prior written consent - and going the bathroom outside on school property is way beyond anything I want to touch. I just wanted to point out that there are times when accommodations cannot be made - the world does not revolve around a single individual.

 

[GraceLuvsWDW]

Graceluvswdw,

I am glad you are getting more help with your situation, I did not do more research when you said you had a advocate set, but if you are not getting the help you need just let me know and I will do what I can. If the attorney is reasonably knowledgeable one or 2 short letters about the multiple of IDEA violations and the abuse and damage being done to your child (CC to the state SPED director) to the district board will generally get things moving.

bookwormde

Saw the atty last night. Don't know if he's specialized in Sp Ed but he offered his services and our meeting was attended by the advocate as well. He advised me to write a letter to Sp Ed Director, principal and Superintendent requesting another ARD for purposes of getting an IEE due to lack of compliance with their assurances during previous ARD and on advice of "outside consultants" (he advised me not to mention attorney.) A parent can call ARD at any time but in order to fight my request for IEE they either have to go to DP (which I can opt for mediation) or comply.

DD home today due to anxiety this am-took her to school and she wouldn't separate and was agitated far more than usual. Once again over assembly and gym (it's too loud she says). Called counselor late morning to attempt to get her to help dd come back to school and cope with anxiety. Counselor said she thought it best for dd to go straight to class "as normally as possible". I called dd's therapist and she advised me NOT to take her back to school today. She felt that, due to the school's lack of understanding in dd's issues, taking her back to school with no support would be harmful to her well-being. So I homeschooled her today from my office. She did workpages all day. I did not make it fun but she likes to do workpages so the anxiety has subsided. Now, what to do until ARD, FIE and change in school's attitude (if that day ever comes)??? One day at a time I guess. Can think too far in advance or you'll just feel overwhelmed!

Bookwormde, let me know if you concur with atty advice, I know you recommended I go this route way back when. Live and learn.

 

[bookwormde]

Graceluvswdw,

It sounds like a starting point. You need to make them is some way follow the regulations

Any chance you can get the therapist to document her concern about school that would help a lot also.

Schmeck,

Doing the best to meet a child’s needs is not having the world revolve around him. I assume that an IEP meeting was called to get a protocol in place to handle similar situation in the future. If it were a child who had a physiological need (such as insulin) I would assume that the need would have been addressed at some level.

bookwormde

 

[GraceLuvsWDW]

BTW, I wanted to add for anyone out there lurking who may also need help this advocate is from a federally funded program to help people with disabilities. He coached me a lot about what to do before, during and after an ARD (WOW, wish I knew then!) and said he could attend them as well. and BTW, if I may say, this advocate was very Aspie-ish imo, though he didn't say anything.

Things I did WRONG in first IEP Meeting:

Allow them to conduct the meeting without a special ed teacher present (against Fed guidelines)
Allow them to prevent me from speaking and introducing MY agenda
Allow them to prevent me from producing and discussing outside evals, letters, and data from last year
NOT Record the meeting
Allow them to terminate the meeting before I was ready
Not Review the minutes before leaving the meeting
Not provide a statement (in writing) of what, why and how I disagree

I was just totally unaware of my rights.
I know better now.

The atty last night kept saying "you've got to stop being questionable about REQUIRING the school to do these things." That's why they won. I wasn't firm enough in my own belief that my daughter needed supports in order to succeed. I was the mom who looked at the school as "all knowing".

 

[DisDreaminMom]

Grace, the previous post was a goldmine of information for the lurkers out there. So many people needed to hear this. Glad you finally found the right people to help. Fingers crossed.

I'll write more when I get time. Just checking up.

 

[GraceLuvsWDW]

the world does not revolve around a single individual.

that's true. and of course in certain dangerous situations it's impossible to prevent anxiety in everyone. but what we are talking about is people who have chronic anxiety. imagine living your life afraid of pretty much all people and situations that are not familiar to you. this is so far outside the grasping ability of people who don't live this way. and it has been shown that due to the different wiring of these kids a meltdown completely shuts down their ability to rationalize, therefore, expecting them to adjust to the world and it's demands is just not reasonable. Luckily, many people realize this and are in favor of doing what they can to "level the playing field" for those that are not able to function according to how the world thinks or mandates they should. and UNFORTUNATELY others think they should just sink or swim. it is not productive to argue every possibly scenario in order to prevent accommodations in my opinion.

 

[Goofygirl17]

that's true. and of course in certain dangerous situations it's impossible to prevent anxiety in everyone. but what we are talking about is people who have chronic anxiety. imagine living your life afraid of pretty much all people and situations that are not familiar to you. this is so far outside the grasping ability of people who don't live this way. and it has been shown that due to the different wiring of these kids a meltdown completely shuts down their ability to rationalize, therefore, expecting them to adjust to the world and it's demands is just not reasonable. Luckily, many people realize this and are in favor of doing what they can to "level the playing field" for those that are not able to function according to how the world thinks or mandates they should. and UNFORTUNATELY others think they should just sink or swim. it is not productive to argue every possibly scenario in order to prevent accommodations in my opinion.

Grace- That is so well put! It is so hard to explain generalized anxiety or panic to people. DD had a panic attack in class last week and asked to go to the nurse. The teacher told her to wait 2 minutes while he got the rest of the class started Yeah, she can just put the panic on hold for 2 minutes! Some people just don't get it even after all this time.

I hope the attorney can help you get the services you need for your little girl. She deserves to feel safe and secure in her school and to have her needs met.