Behavior Challenge Thread

[bookwormde]

Kymmyk13

A formal diagnosis for Autism is a multidisciplinary process so one doctor certainly could not do an evaluation remotely. Check to see what the scoring was on the WPS/SRS evaluation that he did, if all 5 subscales T scores are well below 60 then it is possible that he is correct but from your description I do not know how that would be possible. IF by chance he did not do this evaluation (you would have filled out a questionnaire for it) then to make any judgments about the existence of Autism genetics is grossly negligent.
Again please read the Attwood book so you can make your own judgment about the competency of the clinicians and educators that your daughter is being supported by.
You should get her to a pediatric developmental neurologist with experience with Aspergers girls.

bookwormde

 

[koolaidmoms]

Good luck. Anything your daughter needs to succeed to the best of her ability in school in NOT unreasonable.

You are right. You cannot be seen as emotional or complaining or they will be all over that and try to dismiss everything you have to say. Have all your points of what you see as her strengths and weaknesses written down.

Some of the things I know of for sensory issues (not sure what your daughter needs):

1. Using a half ball on a chair or exercise ball instead of a chair
2. Using a large weighted bag in their lap for pressure
3. Fidgets or water tubes
4. A space where a child can go safely (nurse, corner of the room to sit and read or put on headphones for a few moments) to regroup. There is a pass that hangs near the door in one classroom where the student can go pick it up and walk directly to the nurse. No questions asked as long as it is not abused. This is for a 6th grader with ASD. No one questions him or stops him.
5. My DS has permission to chew gum. There is NO gum or candy allowed in the school but he needed it so they do it.
6. OT, PT, Speech, Social Skills Groups
7. Ear plugs for gym are not out of line. If the teacher is a good teacher she can discuss with the class ahead of time that we all have different talents and needs and to do well in gym that your DD needs these.
8. Being dismissed from the Assembly is not unreasonable as you pointed out it is not educational time. She will need to be supervised so maybe having her sit in the office and read a book or color is one way around this.


That is the issue. There is really so much they CAN do. It is convincing them it is in your daughters and their best interest to do it. Be creative. Offer solutions that will not make more work for them but will benefit DD and the class as a whole by having her calmer and focused.

As C&G's Mama said if you can get someone to go with you. Sometimes we don't really hear everything they are saying because we are trying to keep our emotions and sometimes tempers in check. This person could take notes for you, ask clarification on any points they or you might not understand, help keep you focused and offer an "outsiders" opinion of what they saw and heard to help you in clarifying your points and in having someone else give their opinion on what they heard too.

You will do great!!!

Your DD is very lucky to have such a supportive and caring mom who is willing to go to the extraordinary lengths they sometimes make us go through just to get what our kids need.

 

[C&G'sMama]

Hello, where is everyone? Bueller.... Bueller....

I'm sure everyone's busy. DP (koolaidmoms is getting a complex that she's the TK, so I had at least had to post)

Grace.. How'd it go Thursday, Do I need to bring myself down to TX?
Kymmyk - How's it going for you all?
DDM - I'm assuming your busy with the bakery. BTW - love that DS liked the crackers after you put the hole in them (it does change the flavor you know )

Bookwormde - I see you around.

Hope everyone else is doing well.

To Becky, if you're lurking, know we're thinking of you and hope all is okay.

 

[GraceLuvsWDW]

Tell Koolaidmoms I am the thread killer and she can rest easy. I have a long list of thread subscriptions in which I am the last poster. Oh well.

Thursday went fairly well. I had too much coffee and was hormonally challenged so I hope I didn't come across like a nut case. However, she started the meeting with "I've spoken to the principal and she says everything is fine". (to which I start to hear my heart beating in my ears and can sense the cartoon steam erupting-always the same story) She even went so far as to give me an example of dd "comforting" a classmate who was hurt. I don't want to come across as the crazy person but you KNOW when they are either misrepresenting your child or misunderstanding. I said all reports outside of school show social difficulties, social evasion, social aggressiveness, anxiety and yet this is the ONE place where everything is OK despite the fact that dd seems upset, forlorn, withdrawn, and weepy or agitated many days after school? I nonchalantly asked dd about the child at school who was hurt and she said she wanted to know how he hurt himself. So there you have it, school uses dd questioning how he did it as an example of her comforting a classmate. Anyway, I requested they speak to Dev Pedi, Therapist, and OT re: dd's behavior OUTSIDE of school. We'll see if they even bother. I also asked if one of our team could observe dd in the classroom and they "will have to check".

However, perhaps just going over everyone's head helped as dd had a good day Thursday and Friday. They allowed her to use the Pony Pass on Friday and she used it when she wasn't upset but for curiosities sake, which is good imo because she'll know how to use it when she IS upset (hopefully they won't use that as an example as abuse-I explained to her she COULD NOT use it to get out of something that she needs to do). At the meeting I asked for only three mods: exemption from assembly when needed, taken to classroom in am before class arrives, and use of pony pass. If they comply with these I will then work with the other sensory mods. I flat out told the Dir of Sp Ed I would be either filing a complaint or getting an IEE if something wasn't done asap, she said "why would you do that when you have the best eval $ can buy?" referring to my UTHSC eval. I said, but you don't even recognize that eval. She said, yes we do but Asperger's child doesn't need Academic intervention, they need 504 mods. I said, well, where are the 504 mods? She said she would "get with the school to implement". I asked specifically (and signed documents) for the school counselor to speak with dd's therapist. Well see if they do, I really hope they make the effort. I told her my only concern is that they don't put supports in place now then she WILL qualify for Sp ed in a few years. She said unfortunately it has to play out first as only academic failure is addressed in Sp Ed.

At least dd had some good days and we have had a pretty good weekend. I'm working on our March WDW trip!!!! I had to order a new stroller as our old one only was rated to 40 lbs. So I found one rated to 55 lbs-she's only 43 lbs right now. I let her "pick it out" to avoid any freak out when the old stroller goes away. Made it a "special" thing. A "big girl stroller".

We're staying at Pop which is dd's FAVE but not mine. I LOVED the Poly but after staying there dd said Pop is better. Well, at least it's cheaper!

 

[bookwormde]

Just checking in, there was a James Gurney (Dinotopia, national geographic etc.) exhibition at our local art gallery and he is the artist in residence this week. We took a the family tour and the boys had lot of fun, got their pictures taken by the professional photographer who was "covering it" (I signed releases so they could use them) and DS "corrected" all the errors in the presentations and asked lost questions (5X as many as any of the other kids). We went to the talk he put on and it could have been a motivational speech directed specifically for my older AS DS. DS asked a questions (about how he came to the concept for Dinotopia) and he came up afterwards and greeted DS and they talked briefly, it was really special. Interesting that he comes from a long line of engineers, With his exceptional creativity, visualization am methodologies and family history I sort of assume there are some "genetics" involved. He could not have been nicer or more genuine. A really special day for the boys.

School is closed tomorrow so I guess I am home with the boys, (DW was off 2 days 2 weeks ago when DS was sick).

bookwormde

 

[saveaquarter]

Hey everyone! I just waned to share a bit about our week last week. It started terrible, last Sunday J was in the ER with some serious pain. There's something wrong with his pancreas, we're still waiting for the definitive diagnosis, but they're leaning towards pancreatitis. His pain levels have been getting steadily worse over the past couple of weeks, to where he was practically unable to move or speak in the middle of last week.

On Monday he had stopped at an animal shelter to pick up a cat that had been picked up that belongs with a rescue group he works with, and met an 8 month old beagle with arthritis so bad her joints have visible fluid pockets, her eyes were clouded over from dehydration, and her ribs were showing fro malnutrition. None of these things were a result of the shelter, she had only been picked up days before. J made her a promise he'd be back, and and Thursday we got to keep that promise. It was her last day, but we made it in time.

The difference she's made in J is incredible. He's still obviously fighting pain, but he's more determined to get better, and he's getting up and walking her around the yard a few times a day when he can barely stand. And she absolutely loves him. Swollen joints and all, she's all over him, it's like they were meant for each other and she knows it.

And, I just wanted to say, to kymmyk; if you think your daughter can have an easier time of things, and aren't satisfied with how things are working out for her, seek other opinions. Find as many doctors as you have to until you see improvement in her. Some doctors will fit, some wont, and sometimes it can take some searching. I really hope you can work things out for both you and her, there's no need for either of you to struggle quite so much. Good luck, and keep us updated!

 

[GraceLuvsWDW]

Saveaquarter, I am so sorry to hear that your DH is still having problems. I hope they figure out what the source of his issues are soon. It is heartwarming to hear the story of the dog.

Things are well here! Hooray! I really think the anti anxiety meds are working. DD is having far less anxiety in the am although the pm letdown from school is still an issue. But I see a glimmer of hope and am very thankful for that!

Bookwormde, it's fun to hear about your older ds and the cool ways you find to play to his interests!

DDM: how's the GF/CF stuff coming along? Permits and stuff working out?

Getting excited about our upcoming WDW trip! This is the longest I've gone without my "fix" in about 3 years! tick, tock. 38 Days!!!!!

Hope all is well with everyone!

 

[kymmyk13]

Sorry I have not updated, mt life has been crazy. The token system is working somewhat we are still working out the kinks.

My Dh and I went to counselor yesterday, to get help for us on how to help/handle DD. He suggested that we get a Spect Brain Imaging Scan from a center in NAshville, well after contacting them they are no longer doing this test but referred me to the Amen center in Northern VA., dont know how this is going to work out being so far away and having to pay for the test out of pocket. (anyone had any experience with this test)

Counselor also mentioned that we may want to explore a seperation anxiety issue with her. Which I have always noticed, this started at about 2 months.

 

[GraceLuvsWDW]

We have not had a brain imaging but we did have the EEG study. This was to rule out seizure. I would ask why the Brain Scan and what can it detect? Sounds like the counselor was suspecting a brain issue and if so I would only do those studies under the care of a Pediatric Neurologist. An Autism center or University Health Science Center could tell you if that test would be a reasonable test to perform.

The brain is still a very unknown science, they have done numerous studies on Autistic brains and shown smaller sections of brains and large conduits between the prefrontal cortex and rear part of the brain that processes information. It is my understanding that even knowing these sections are abnormal still does not lead to a definitive diagnosis, that is, unless there is a seizure disorder.

Unfortunately, this is all just a grey area.

I went to social skills class with dd tonight. It is interesting to me to see the broad spectrum of kids also on the spectrum and get to talk to their moms. Some are more sociable, some are more hyper, some are more spacey, some are more anxious, it's all just a spectrum! There's no one size fits all definition of these kids. It's nice to be in a place where we're all "normal" and talk to the kids about their areas of interest-no need for eye contact or social etiquette (even though that's what they're there to learn). Four boys and two girls. It makes me very happy that we have a place like this where for a moment we are just like everyone else! And ANYONE can be there and see the "special" ways of these kids. They are brilliant!!!!!

We're going to get a play group together for us!

 

[dogodisney]

I have been visiting this thread here and there (somewhat following Grace and her DDs journey) but never posted because I felt that I had nothing to contribute and that what we are dealing with is nothing compared to what the rest of you have on your plates.

But now here I am…..

My DH and I have a parent appointment with a Neuropsychologist next month. We are working to get our DGD (6) evaluated. Today I received a packet of forms in the mail that we and her teacher need to fill out. They are patient history, Behavior Assessment System for Children (BASC-2), and the Behavior Rating Inventory of Execution Function (BRIEF). Can you tell me anything about these and what we can expect from our meeting?

Thanks!

 

[bookwormde]

They are both to evaluate for a broad range of issues including anxiety, attention, compulsiveness etc. They are very much jsust a first screening and no clinican should make a diagnosis based on them.

bookwormde

 

[dogodisney]

They are both to evaluate for a broad range of issues including anxiety, attention, compulsiveness etc. They are very much jsust a first screening and no clinican should make a diagnosis based on them.

bookwormde

Will the meeting consist of us just going over the forms? Should we expect anything else?

 

[GraceLuvsWDW]

Will the meeting consist of us just going over the forms? Should we expect anything else?

They will probably take a very extensive history of the child. They will ask you every last detail about pregnancy through today.

 

[DisDreaminMom]

Hey Kids, here I am!!!

Ok, let's update...Kids are well. Let DS start taking violin lessons because the percussion teacher was tied up with classes this semester. He likes that just as much as percussion. Frankly, I could put him in several different music lessons and he would be happy. I had his Special Ed teacher conference on Monday and they said he is much improved. He hasn't stuttered this year and they couldn't figure out why. I think it might be because the music helps him "stim" and he lets his tension out that way, but who knows. He still has social issues but is getting better about touching other people or flapping. His work is at or above grade level, except in things that require drawing conclusions (so some math and language arts stuff is just a big mess).

They did ask me about my DD, who is in 4th grade Gifted. I know C&G's Mama have talked about how siblings are coping and last week i sat down and wrote a thing about DD's struggles at school this year and then the computer kicked me off and I lost it all!

Long story short- DD's teacher is a pill. DD went from 3rd grade math to 5th grade when she was put in the 4th Grade Gifted program. The teacher is a Math snob and makes fun of DD or lets the Mathletes make fun of her when she asks questions. Teacher's solution to this problem is making the kids who are in my DD's same situation take tests on the computer until "they get it right".

Plus, a boy was purposely grading my DD's homework wrong and teacher knew it and I had to send a really snarky letter, "I know my Bachelor's is not in Mathematics, however, I helped DD with her work and I know it is correct. I don't wish to cast aspersions on any of her classmates, but perhaps this young man needs more supervision when given the responsibility of grading other childrens' work. Purposely altering another person's grade is generally considered to be academic fraud akin to cheating in most academic institutions."

So after that little missive got no response from the teacher, I thought, "Well, screw it." at the meeting and told the six Special Ed teachers and District supervisor what was going on with my DD, including the time she screamed, "I'm so stupid in math that I may as well kill myself!" I don't think it's appropriate for a 9 year old to want to commit suicide. Maybe I'm overreacting. Don't think so...

Anyway, DD comes home from school with a giant smile on her face and says, "Teacher actually explained how to do the math work today and I got a 100% on my exit test!!!" Which confirms what I keep telling her, "There is a giant difference between being ignorant and being stupid!"

So my back-door approach was a good one. As my daughter said, "Do you think it was Teacher Peer Pressure?"

That is exactly what I think. I think those ladies are big fans of my DD and had no idea that she was that upset because she is so busy helping other kids and just keeps taking what they dish out and not complaining.

And next time I get a chance, I'll write about the great Gifted Educator's meeting I attended and how much it made me aware of the fact that I need to be much more on top of things, even for my "easy" child.

And Bakery is slow but steady. I am getting ready to go redo house and shopping for sinks and stuff I need. Food Manager's Safety class is in March and fingers-crossed, will be up and running in the Spring.

We've had a great time over the snow days experimenting and I've helped DD with fractions by making her divide recipes and have cook-offs with me. It's really fun and we might have made a good pretzel and for sure a great GF/CF sugar cookie.

You kids have fun. I'll check back soon.

 

[Earstou]

Proud mom here!
My ds read Scripture in church on Sunday for a youth service. I was shocked when he volunteered, as he has refused to do some activities and contests because they might involve putting himself in public view, such as walking across a stage to accept an award. No way would he have considered speaking publicly in the past.
After he read and sat down, the pastor (who doesn't know our son, as this isn't our home church) told him from the pulpit that he had done a great job and that he also had a great speaking voice, and she wanted him to know that for the future. The congregation then applauded and afterwards many came up and spoke with him.
He took it all very well, and thanked everyone, instead of hiding his head like he would have a few years ago!
I'm just so happy that his first time speaking went so very very well, and I'm hoping it's a huge confidence booster! I never knew my aspie could do so well. With all the growth we've seen in the last few years, I worry less and less about college coming up soon!

 

[KirstenB]

So much to catch up on. Bookwormde, I'm glad your boys had such a good time at Dinotopia. Save a quarter, very cool about you guys rescuing the beagle. I hope your dh is feeling better and his pancreas has calmed down. Grace, I wish we had something like social skills class around here. I'm glad you guys got to meet other families on the same trek. DisDreamin Mom, awesome news about your bakery. Earstou, I'm so proud of your son. A lot of typical kids won't get up in front of a congregation, let alone someone with ASD.

Our 2 dd's finally went back to school today for the first time since the end of January. I was tempted just to break out the champagne leftover from the holidays, but was just grateful to run errands without bribing or threatening anyone!

 

[GraceLuvsWDW]

Hey guys, guess what? I had a meeting at the school today with the principal, the counselor, and the 504 coordinator. COMPLETE 180 degree turnaround!!! They're immediately implementing everything I requested, holding a staff meeting on Tuesday that every teacher and administrator dd comes in contact with will be at, putting the "pony passes" in every place she frequents (they laminated 24 of them), approved her exemption from assembly, implemented an as needed exemption from gym including use of earplugs, etc.

Wow! I don't know what did this, perhaps my call to TEA (I told them I consulted with an attorney but did not tell the school or district-wonder if TEA called the district? ), perhaps my conversation with the Director of Sp Ed, ???? I don't know what did it nor do I care I am just very happy things are turning around! We have a set meeting every month with the team to go over progress and they are already talking about potential teachers for next year and potential issues to be dealt with in second grade.

HOOORRRRAYYY!!!!

Don't want to get too excited but this sounds like a HOME RUN to me!

 

[bookwormde]

GraceLoveswdw,

Great that you are making progress, if they can make resonable progress in providing an appropriate enviroment you will be amazed how much Grace's abilities and adaptation will improve.

bookwormde

 

[Kazzy1548]

Good for you Gracelovesdisney.... You've worked hard for your DD. Enjoy the fruits of your labor.

 

[dogodisney]

They will probably take a very extensive history of the child. They will ask you every last detail about pregnancy through today.

Good thing I have a month before the appointment so I'll have enough time to remember everything.

Hey guys, guess what? I had a meeting at the school today with the principal, the counselor, and the 504 coordinator. COMPLETE 180 degree turnaround!!! They're immediately implementing everything I requested, holding a staff meeting on Tuesday that every teacher and administrator dd comes in contact with will be at, putting the "pony passes" in every place she frequents (they laminated 24 of them), approved her exemption from assembly, implemented an as needed exemption from gym including use of earplugs, etc.

Wow! I don't know what did this, perhaps my call to TEA (I told them I consulted with an attorney but did not tell the school or district-wonder if TEA called the district? ), perhaps my conversation with the Director of Sp Ed, ???? I don't know what did it nor do I care I am just very happy things are turning around! We have a set meeting every month with the team to go over progress and they are already talking about potential teachers for next year and potential issues to be dealt with in second grade.

HOOORRRRAYYY!!!!

Don't want to get too excited but this sounds like a HOME RUN to me!

That is great news.