Behavior Challenge Thread

[BeckyScott]

DisDreamin, I actually like the corn noodles better than regular ones. Not the rice so much, they get mushy too easily. But the corn ones are pretty good. They'll even stand up to a re-heat.

I do know what you mean about the meds. We sort of had that happen with oldest DS, with the Adderall. Which by the way, he's no longer on. He was on a very low dose (5 mg) and he's almost as big as I am and they told me basically that it was such a low dose (think giving yourself the same dosage of something that you'd give a 4-year-old) that it really wasn't doing anything at all, except a placebo effect of him thinking it would help.

But anyway, what he was doing was this: he has sleep problems. He stays up too late. During the school year, it's awful to get him out of bed in the mornings. He understood what the Adderall was. And he was using the Adderall to "wake me up in the morning". Which I interpreted to be a more recreational use of it, than it's intended medicinal use, if you kwim. And I didn't like that one bit. It makes me feel better that the dosage was so low it was more a placebo, but I don't like the idea.

Anyway, after finding out it wasn't doing anything, the choices really then are to just stop it, or to up the dosage. I am sticking with the first. And he "discovered" that a soda or a cappucino in the morning does just as much good as the Adderall was doing. (that makes sense) I stewed over it for a while and decided that I would rather have a kid addicted to cappucinos than a kid on Adderall. You know, everyone makes their choices.

Sorry, I got a little bit of ramble in there.

 

[DisDreaminMom]

Becky, I'm with you on the cappuccino thing over the Adderall. In the "pick your poison" category, caffeine trumps pharmaceuticals. Period. My sister gives her kids M & M's to wake up in the morning. She has been since they were in pre-school. In our house, I just listen to them abuse me verbally until I drop them off at school.

Did you see that the Rocket Scientists at Big Government are contradicting the whole diet related autism issue? Basically said there is no evidence to the food allergy/autism relation. Read the whole article and wasn't impressed. It might as well have had the byline, "Brought to you by the wheat producers of America!" Discuss...

 

[bookwormde]

DisDreamMom,

Flattered but no just an aspie.

Firefighting= satisfying heightened sense of social responsibility, a great opportunity to apply non linear dynamics and lots of accumulated disparate “data” to an “unpredictable” and fast moving situation and a great place to get a socially acceptable “high” (adrenaline)

Knowledge=years (lots) of accumulation of massive amounts of for the most part useless information from a need to know anything technical that I do not know (boy did the internet make that a lot easier). One of the least studied Aspie characteristics is that many of us continue to “need to learn” throughout our life span as is typical in younger NTs.

Now DW just wants to know when I am going to finish any of a multitude of projects I have started = aspie different perception of time, and technical now, social/ appearance when I get around to it.

As for the wetting issue, we just used a waterproof mattress pad, and did a lot of laundry. When DS would stir in the middle of the night we would wake him (sort of) and he would go and pee, of course in that state his aim was marginal, but that is another whole set of stories. He was sleeping with us so that made it easier. It took a while but frequency of accidents decreased finally to zero (knock on wood). I really think it is a combination of different sleep patterns and sensory differentials.

We have never had the sleepy morning problem; ours are up at 5AM which another whole issue (at least for DW) I am up anyway (imagine that). I think the caffeine thing is a great alternative but how are the drug companies going to make their money.

You guys know my thoughts on the diet thing, many of the autism experts just cannot grasp that the dietary changes physiologically do nothing different for our children than NTs, the difference is that that little extra “intellectual horsepower” and “processing efficiency” is often just enough to allow a significant percentage of out children run the autistic mind efficiently.

bookwormde

 

[BeckyScott]

bookwormde, my boys have marginal aim even when they're fully awake.

I am really quite happy we had all that allergy testing done on DS. Because it's not a matter of "oh he has autism so we're doing gfcf", it's "he's had allergy testing and here is the chart". DS's school, there is another child a couple years older who is gfcf and that is the first/only experience that most of the teachers have had. However. That mom (who I know and is a sweetheart and very good advocate) also will sometimes let her son "cheat", particularly on special occasions. So I think the teachers got the impression that while gfcf is one thing, if he accidentally got hold of something he shouldn't, okay try not to let it happen again, but just let mom know and it would be all right. Which is not the way I do things. Having the lab paperwork threw it into a different level because the schools are mandated to deal with food allergies.

Anyway, I had an allergist tell me that allergies and autism weren't related. We also only went to him once. He was really rude about it too. Do you have a link to the article? I haven't seen it.

And that leads me back to our trip to Disney last summer. Do I have any scientific proof that would hold up in court? No. But I know what I saw. When DS's allergies and eczema got better, his autism got better too. Maybe because they're one in the same. Maybe because when he wasn't miserable with the allergies, his whole body was happier and that helped the autism. Maybe because he is a little ball of inflammation and when that is reduced, there is a domino effect of helping other parts of his body. Anybody wanna buy a house?

 

[C&G'sMama]

Hi all,

Just checking in (ok and avoiding the kitchen which desparately needs to be cleaned). Summer is so far so good. It 's hard to believe some of you are getting ready to send the kids back to school while for others of us summer is only 1/2 over. DP is at a PTA conference in Utica this weekend so the kids and I went to Seabreeze (an amusement park about 6 miles from our house). DS had gone earlier in the summer with me but DD was sick so the 3 of us went. He amazes me. He LOVES the rides. I wonder if it's the motion? The only thing he won't go on is the Screaming Eagle which is one of those boat like things that goes all the way around. But he does the Whirlwind which is similar to the Primeval Whirl, the spring. Think a very tame version of Tower of Terror etc The best part is his sister loves that stuff too so I don't have to go on everything. I don't mind some of the stuff but by the end of the day I was done. They also went on a tube waterslide called the Helix that is basically like being sucked into a giant toilet bowel and shot out. Again, they can go without me. I'm partial to the Lazy River and the wave pool.

My sister is renting a cottage for the summer at a lake nearby. She invited us down for the day yesterday. DS screamed for 1/2 hour about not being able to ride in the front of the paddle boat first. But eventually he stopped. He went for his annual appointment with the developmental pediatrician and he gave us a referreal to get him in to a social skills group. He feels that will help a lot of the behaviors. We're hoping for our sake as well as his you know?

Hope everyone is doing well.

Ann

 

[GraceLuvsWDW]

Hi All,

Just checking in also. Our DLR trip is two weeks away. I'm starting to stress over it. I took my dd to the San Antonio Zoo yesterday and had some issues. Don't ya just hate the other parents that look at you as if something is wrong with you as your child is screaming as though they are dying?? I just wanted to scream Mind your own business! My friend and her dd5 and ds3 were here for the weekend and that "amped" up my dd. She was extremely sensitive and just lost it with no provocation (or not that I saw) many times. The kids were playing "Perfection" (ok the irony is not lost on me) and my dd just COULD NOT deal with the pressure of the timer. She really had a doozie of a melt down. But I took her into her room and used the Problem Solving maneuver and said "what can we do to make everyone happy?" Finally after 30 minutes she seemed willing to compromise. Then another try at the game and another meltdown so the game is going away. She can handle it alone but with others "helping" she views them as "messing her up". She won't listen to "it's just a game". To see her, you'd think it was life or death.

Anyway, another meeting with neuro psych where the ADOS was once again completed on my dd. They are definitely diagnosing Asperger's and possibly ADD. I was alarmed when they gave me literature on "special" schools in the area because it has always been my intention of mainstreaming her as much as possible. I don't want to try to fit the square peg in the round hole but I do not want to segregate her either. I have a two hour meeting to go over all the data in two weeks-2 days before I leave for Southern California.

I have always done the "stroller as a wheelchair" gac for my dd at WDW which gives her a private space which she can control. This has helped tremendously. However, we have always waited in the lines with the stroller or obtained fp, except at MK where some rides have alternate entrances and a few other rare exceptions. I am worried about the day at DLR, perhaps I will inquire about the line issue. Our date at DL is the first non-blackout day of the summer so I am expecting the crowds to be extreme. If they would just allow us unlimited use of FP I'd be happy to wait for our window but I'm sure I'll be locked out of FP after only obtaining 2 or 3. Really it would protect their customers from the wrath of my dd when she's frustrated or overstimulated.

Anyway, that's about all there is here, hope all is well. I guess a lot of our upcoming posts will be ARD, IEP etc related. I have a lot of questions!

 

[bookwormde]

GraceLuvsWDW

Games with timers were a “trigger” that was guaranteed to create extreme anxiety for my DS at your daughter age (pre formal diagnosis). This would persist long after the game was abandoned. The idea of “just a game” is a completely a social nuance so it is for the most part lost on out kids (especially at a young age), “why do something if you were not intent on doing it 100%”.

Sounds like you are making good clinical progress, and are getting informed and “armed” to enter the educational “battle”. It is a lot of extra work to “go mainstream” but has great value.

C&G’s Mama

“Summer at the lake” brings back some great memories of vacations on the Finger Lakes when I was young.

bookwormde

 

[C&G'sMama]

GraceLuvsWDW

C&G’s Mama

“Summer at the lake” brings back some great memories of vacations on the Finger Lakes when I was young.

bookwormde

They're at Conesus Lake, the Western most and one of the smaller of the finger lakes. It's also where our mom's family had a cottage when she was growing up. Unfortunately my father never liked the water and the cottage was sold outside the family some years ago. The finger lakes are wonderful.

 

[BeckyScott]

We have a Perfection game, how funny. Neither kid actually plays it the right way. Youngest DS thinks it's funny to watch the pieces fly out. That's what he does with it, loads up 3 or 4 pieces (which is about all he ever gets done) and watches them fly and then he starts flapping. He likes it better when Mommy puts the pieces in because she gets more than 3 or 4, thus more stuff to fly out. The whole concept of the game is lost. Then, when I think about it, they never play any board game the "right" way. They make up their own game, or just mess around with it.

Grace, as an idea... if it comes up in your meeting... when I was pushing to keep DS in his regular school instead of switching to the school with the autism program, we concluded to do it on a Trial Basis. Which in our case meant, they left him alone and we did a check-in when first quarter grades came out. (which I guess for the older elementary grades, most of the first quarter is review of what they've forgotten over the summer, so it should be easier than the rest of the year) If he could be successful in the regular classroom, so be it. And if there were problems, then we would meet again and address moving him to the autism program. It was sort of a happy medium for everyone.

 

[DisDreaminMom]

I was reading up on all of your adventures. Cabin at the lake sounds like great fun. From personal experience, I never want to go to a cabin at the lake until my son is grown and out of the house. 'Cause it's not that much fun taking him.

GraceluvsWDW, I wish I knew more (or anything) about DLR. I was sad to think that a former member of this fine thread would be THE person to ask, but then, I thought,"She's not available on here to help, bless her soul." But it might not hurt to try to send her an email and ask your questions.

I had the same thing happen with DS on the thrill rides at the local fair. DS rode all the crazy rides-the tilt-a-whirl, the Viking ship, the ferris wheel. etc. I thought the kids' heads would explode they rode so much stuff. And yet I can't get him back on Pirates of the Caribbean. I guess it's the dark. I am planning another WDW trip with my sister and just our two boys in October. It will be fun. I'm excited.

I saw the JMcCarthy article on my AOL page and I'm not smart enough to send a link. My sister cut out two ASD articles from new Oprah magazine (I guess being the mom of two NT kids means she has time to read magazines?). One was very anti-JMcC.

Here is what I think about food, allergies and ASD, and children in general. Kids are not able to disassociate themselves from a trigger problem. My allergies can be bad, or sinus infection, etc. and I can say, "Wow, I feel kind of crummy, but it's my sinus problem>" and go on with my life. If a sensitive kid has a trigger going off, then stop the bus, because everyone has to get off, IYKWIM. I've seen children with horrible skin reactions behave like little monsters and it's obvious what the problem is, and the adults just act stumped as to why their kid is a blithering nut case. Maybe because he wants to rip his skin off and scratch it to pieces. I'm just saying that maybe it's not that ASD kids have a greater occurrence of allergies, but that they "feel" them harder than other kids and it becomes an impediment, not a nuisance. In that same vein, food allergies and chemical additives would then cause much more disruption in a sensitive child than a NT one.

 

[GraceLuvsWDW]

Well I can tell we're going to start the school discussions early.

First of all, let me say I am absolutely uninformed when it comes to playing this public school special needs "dance". All I know is I've heard some of the horror stories. A friend of mine introduced me to a mother of a 16yo AS dd who sued our school district because the girl kept running off campus without the school knowing until she was a "runaway". Because they couldn't keep her safe they had to pay for a special setting that could secure her whereabouts.

Anyway, I've had contact with the Special Ed Director of our school district twice. The first time I called her to tell her about my dd's issues (when I just had a SPD, DCD and anxiety dx). She told me to wait until school starts so they can see what her issues were. FF to a week ago, our neuropsych said to call the school district and "get the ball rolling". I call the director again-she didn't remember speaking to me the first time (convenient amnesia?) and said she couldn't "start the ball rolling" until I had the official dx (eventhough I stated to her the dx is confirmed and I won't have the official report until mid-August). Now, after a little more research I'm finding out that's just not true. Although I do want to give her the benefit of the doubt and not start an adversarial relationship right off the bat. So now I'm left deciding: push the subject and demand a start of legal timer that obligates them to complete their testing in a finite period of time or just wait until mid Aug when my report is in hand to give to them.

The woman with the dd16 told me not to give them the report, let them do their own testing. Anyone have an opinion on this? She also said be careful they might want to remove her from the NT classroom. Anything else I need to know?

What do I need to do leading up to starting this process?

Any advice is appreciated!

 

[C&G'sMama]

I can't speak to whether you should have the school do their own testing. But I can advise this, if you haven't already. Start a 3 ring binder. Keep track of all conversations, emails and any other correspondence with the school distric. Dates, times, everything. What you discussed, what the action items were etc. If you have a face to face meeting with them, document the conversation. Go home and email the school that this is your understanding of what happened, what the action items are and who is to do what. If you do not hear back from them, send it again. We don't do this in an adversarial way but rather we present it as a history. "Here is such and such a letter from such and such a date, saying Mr. B would do this, I would do this, etc.". I'll admit DP is the organized one but when we say "Y happened" and here is the documentation we usually get farther than if it's what I recall vs. what the other person recalls.

I do the same thing in my professional life. I keep track of everything, in writing etc.

 

[bookwormde]

GraceLuvsWDW

Not a good thing when the SP ed director start out with a blatant lie. They do not need a diagnosis to begin the educational evaluation process just your concern about your daughter and a formal request and your signing the permission slip to begin. She should have started this process with your first call. Definitely call and formally request an IDEA evaluation (in keeping with IDEA part B sections 300.125 and 300.320) for your daughter so the time clock starts.

bookwormde

 

[Libbyt]

Buy a copy of the Wrightslaw special ed "handbook" - can't remember the exact title, but it's the one that translates special ed law into plain English. Put in some sticky notes poking out the top - even if you haven't really looked up anything specific, just make it look like you have - although the book is EXCELLENT and will provide you the answers to almost anything you'd want to know. CARRY THIS BOOK WITH YOU ANY TIME YOU MEET WITH SCHOOL PERSONNEL. If they say "gee, I just don't know about that, I'm not sure what the regs are" (this is one they fall back on all the time) then you say "LETS LOOK IT UP - I happen to have my book with me." This little strategy will buy you TONS of street cred!

(Now that I think on it, the book may just be called Wrightslaw, it's by Pam & Pete Wright. Website is wrightslaw dot com - TONS of info there too.)

Good luck - I've walked in your shoes and it's never easy!
Libby

 

[KirstenB]

Well I can tell we're going to start the school discussions early.

First of all, let me say I am absolutely uninformed when it comes to playing this public school special needs "dance". All I know is I've heard some of the horror stories. A friend of mine introduced me to a mother of a 16yo AS dd who sued our school district because the girl kept running off campus without the school knowing until she was a "runaway". Because they couldn't keep her safe they had to pay for a special setting that could secure her whereabouts.

Anyway, I've had contact with the Special Ed Director of our school district twice. The first time I called her to tell her about my dd's issues (when I just had a SPD, DCD and anxiety dx). She told me to wait until school starts so they can see what her issues were. FF to a week ago, our neuropsych said to call the school district and "get the ball rolling". I call the director again-she didn't remember speaking to me the first time (convenient amnesia?) and said she couldn't "start the ball rolling" until I had the official dx (eventhough I stated to her the dx is confirmed and I won't have the official report until mid-August). Now, after a little more research I'm finding out that's just not true. Although I do want to give her the benefit of the doubt and not start an adversarial relationship right off the bat. So now I'm left deciding: push the subject and demand a start of legal timer that obligates them to complete their testing in a finite period of time or just wait until mid Aug when my report is in hand to give to them.

The woman with the dd16 told me not to give them the report, let them do their own testing. Anyone have an opinion on this? She also said be careful they might want to remove her from the NT classroom. Anything else I need to know?

What do I need to do leading up to starting this process?

Any advice is appreciated!

At our dd's school, once summer school concludes, the people who conducted her assessment, the ST, PT, OT and special ed teacher, and school psychologist are gone for the summer. So if it 's like here, you may need to wait until school is back in session. Having said that, I'd push like Hades to get the assessment done within the first couple of weeks. I've seen kids whose parents didn't push, and in November, they were still waiting to be assessed. Once school starts, everyone is busy with kids already receiving services.

Our teachers do report back about a week or so before the official start of school. IF at all possible, that would be the prime time for them to assess your daughter. They won't be working with other kids yet, and you could get the ball rolling.

 

[BeckyScott]

It's called "From Emotions To Advocacy".

(ding ding ding! Do I win a prize?)

Yes. IMHO, the #1 rule is, if it isn't written down, it didn't happen. Absolutely. If you do a written request-- I always hand-deliver them so that there isn't any chance of "lost in the mail"-- if you do that, then they have to respond in writing. That is usually enough to get the ball rolling.

Even though the teachers are off for the summer, it is possible to get a meeting, but it will likely be in the couple of days right before school starts. I am going thru this right now too, oldest DS changes schools and I was told there would be a transition meeting, but nobody ever called about it.

Worst-case scenario, you tell them you need a meeting and tell them you need a meeting, and they don't do one. And her first day she's in a regular room with no para. And the teacher will make pretty darn sure that a meeting gets lined up after that. Is it fair, no, but it gets the point across.

Another point about the assessments- most schools will want to do their own whether you've had one from a psych or not. Because they don't have to go off of the psych's suggestions or whatever, they can disagree with your dr. (and if they do, you can request an outside eval from a 3rd party and have the school pay for it, although they can disagree with that one too) Doing their own evals gives them more of a bargaining chip. I've never had the school flat-out disagree with either kid's stuff, but they could and some schools will try. So they should want to do the evals themselves, rather than relying totally on your dr's eval.

And you're right, you don't need a dr's eval to get the ball rolling. We didn't have one for oldest DS. I requested that he be evaluated, in writing, and the school did the evals and that was that. They knew I was going to get him evaluated outside, and we have since then, but it hadn't been done. If I were you, I'd write a simple letter and get it over to the right office. Don't even mention that you'd already talked to them, you forgot just like she forgot. I found a sample one http://www.concordspedpac.org/RequestEval.htm#Initial And get the dang Wrightslaw book!

 

[Libbyt]

Emotions to Advocacy is a separate book, but also very, very good........Wrightslaw is the original "handbook" on special ed law. The Wrights also do workshops - go to one if you can, it will change your world!!

 

[bookwormde]

Here is the link to Peter Wrights site

http://www.wrightslaw.com/

Seminars are very wrothwhile

bookwormde

 

[GraceLuvsWDW]

Ok, well I went to the Administration building today-just got back. Asked for the Special Ed Director. They sent me to the 2nd floor. I told the secretary that the Director said I needed a report from my Dr and that I was told no, I do not need a report from the dr. The secretary went and got a woman (not the director). I told her I didn't want to wait until I got the report that I wanted to start the process now so that modifications could be in place asap. She said they HAVE to have a Drs note! She said they can't just "take my word for it". If I don't have a Drs note I have to wait for school to start so the teacher can recommend an eval.

I asked her several, several times. I told her that according to IDEA I could request it and she told me NO that's NOT true. So I asked for the director. She said she's in "meetings" all day. I asked when she would be available. She said tomorrow. So I am going in there tomorrow and I am going to do whatever I have to do!!!

If they refuse to evaluate, what can I do?

She kept asking me "what is your dd's diagnosis?" but I had my dd with me so I didn't want to go into detail there but I got so frustrated I finally told her Asperger's! She then said they wouldn't even take the Drs report, they HAD to do their own eval and couldn't do it until she was "referred" for an eval based on academic issues.

So, guys, what do I do now?

 

[bookwormde]

IF you want you can just get a note from your daughters doctor stating that an IDEA evaluation is needed but while this might move things forward more expeditionary it should not be needed.

Call the state DOE special education department before you even bother with your school district and talk to them. Explain the situation and they should be able to give you guidance and someone at the state for the local district to call to get better "guidance" for the district.

Texas
Texas Education Agency
William B. Travis Building
1701 North Congress Avenue
Austin, TX 78701-1494
Phone: (512) 463-9734
Fax: (512) 463-9838
TTY: (512) 475-3540
Email: teainfo@tea.state.tx.us
Web: http://www.tea.state.tx.us/

bookwormde