Behavior Challenge Thread

[saveaquarter]

I'm going to second the motion that the Wii is EDUCATIONAL! And think of the improvements in motor skills!

I have MS too and one of the games for Wii that was recommended to me was Mercury Meltdown. (Or Madness, not sure.) You have to guide mercury through these puzzle things. It's really fun and does help with focus and concentration. Plus it is less expensive than a lot of Wii games.

I just checked the pricing, and we're DEFINITELY getting that one. Thanks so much for the recommendation! We've already seen improvements thanks to the Wii, any and all games that will help that even more are wonderful!

Hey all. If you haven't had a chance to check out latest trip report, it's located on the "regular" disabilities board (vs the disabilities community board)

It's from our trip in December. We're up to towards the end where DP ends up in a wheel chair with me pushing her through EPCOT. Of course DS insists on pushing at one point. It's made for some great stories.

- A

I'll definitely check that out soon! I hope you guys had a blast. I can't wait for our trip this year, reading other people's trip reports always get me so excited.

I mentioned this a while back, and wanted to leave a link here, since a few people seemed interested. I'm writing a blog, which I did neglect when things got crazy busy this past fall, but will be writing every day from now on. It focuses largely on what it's like living with and being married to someone with Aspergers, with occasional forays into other parts of my life.

http://yourcopirate.wordpress.com/

There's also a link to my husband's blog on the sidebar. You'll have to forgive the colorful language and sarcastic humor, I don't reign myself in there quite as much as I do here

 

[bookwormde]

Saveaquater,

Great blog, I was wondering if it would be ok to share it with the members of the support group I facilitate, they are nice people although somewhat direct (imagine that). Please feel free to say no as I would not want to inhibit your writing.

I shared it with my wife and she is hopefully going to share it with one of my nieces who is struggling in a relationship with an aspie (not my genetic relative) who is for the most part still in denial.

bookwormde

 

[saveaquarter]

Saveaquater,

Great blog, I was wondering if it would be ok to share it with the members of the support group I facilitate, they are nice people although somewhat direct (imagine that). Please feel free to say no as I would not want to inhibit your writing.

I shared it with my wife and she is hopefully going to share it with one of my nieces who is struggling in a relationship with an aspie (not my genetic relative) who is for the most part still in denial.

bookwormde

Why thank you! And of course! Feel free to share it with whoever you like. And if your niece is in need of any advice, I'd be more than happy to help her out. I'm adding some contact information to the 'what goes on here' page on the blog, I don't mind being contacted directly by anyone who has questions they don't feel comfortable posting publicly in the comments.

My husband's blog is linked on the sidebar, but the direct link is; http://asparaguseye.wordpress.com/ He doesn't mind that being shared as well, though I will say he's fairly sensitive to criticism, directness is fine, but we're trying to keep it a safe space for him to get out feelings he struggles to express elsewhere.

 

[C&G'sMama]

Save A Q - thank you for the links. As a parent of a child with Asperger's and wondering about his future, it is nice to get both yours and J's perspective.

Thank you for sharing.

-A

 

[GraceLuvsWDW]

Hello all,

I'm really down and out and in need of some support or just to vent. A really, really, really bad day today. I'm sure most of you can relate. We've had 2 weeks of practically bliss and today dd had a panic attack and another all out meltdown in the car in which I had to pull off the road. Tonight she is beside herself, crying, yelling and writhing. She says her stomach hurts and her head hurts and she is in one of those bouts where it seems her skin is crawling. It is all I can do not to lose it myself, she is clingy at these times, follows me around, even into the bathroom.

It is so apparent to me that this is school related. The anxiety of school is causing tremendous anxiety in her and her body and mind are lashing back. I just don't know how to help her! Do I go to Psychiatrist for meds? Do I pull her out of this God forsaken school? Do I go higher up and demand a smaller class size or some school intervention? Who is higher up than the principal who simply replies to my concerns "yes, coming back to school after a break is hard on all the children (imagine the sarcastic tone)"

I just as a parent cannot knowingly cause this much anxiety in my dd. I have to intervene, whether it's putting her in another school or something.

Thanks for listening. I am very heartbroken tonight.

 

[bookwormde]

While anxiety can heighten sensory sensitivities, I would guess that she is actually not feeling physically well. For many of our kids this gets magnified and they have a hard time localizing the issue.

Have you tried any deep pressure therapy for these times, often it help “reset” the sensory system even if just for a brief time. Any qualified PT/OT can teach you the basics.

You really need to exert Grace's IDEA rights and if the advocate who is helping you now is not making progress and you are not up to fighting the battle yourself then spend the $ on an IDEA attorney to get at the problem, not treating symptoms.

bookwormde

 

[DisDreaminMom]

OK, here's my $.02. Either she really is getting sick, which is entirely possible, and you should cut her some slack and let her stay home until she's better OR maybe you should consider taking her back to the other school where she was happy. Is it failure? I don't think so. Maybe she's just not ready. Maybe in a situation where YOU and SHE are not both stressed, it would be a good time to do this school. I just think you've been fighting an uphill battle for a long time and nobody is giving you an inch. And after you take her back to the other place, write a nasty blistering letter to the school board if it makes you feel better. Then tear it up. And then re-write it and send it!

Here's how I see the world: Stress is deadly when it has no solution. A little stress makes you stronger. Running full speed into a concrete wall day after day will kill you slow or fast, depending on how hard your head is. Stress manifests itself in some strange and scary ways. Is it worth it?

I'm a full-on proponent of the concept of "Prepare your child for the road, not the road for the child" but in this case, I don't even think she's near the exit ramp. How in the hell is she supposed to even get on the road at this rate?

And this time, get out your camera phone and take some video of your DD when she's in pain like this. Because if you ever have to help out your case, then you might find this kind of "evidence" very helpful. I did it with my son when he was having a lot of problems when he was younger. Just in case. I think I showed the footage I took to one teacher who wouldn't listen to me or i took pictures and kept them to show.

The weight of the world is on your shoulders right now and my heart aches for you. It sounds like everyone around you knows what they are SUPPOSED to do, but no one actually wants to DO it. And that is very sad and speaks volumes about the world in which we live.

You're not crazy. Just in case you needed to hear that. You're not. You're fine. It will all be fine. Go have a pity party in the bathroom. 10 minutes of tears set to the timer. The take a shower and put on a nice outfit and do something you and your daughter like to do together.

Or go see The Blind Side. I saw it yesterday and I thought that Sandra Bullock's character reminded me of me (but thinner, richer, and a little more Southern). I think you sit through that movie thinking "That's one crazy gal!" or "I'd do the exact same thing in a heartbeat." And while I identified with her, I couldn't help thinking that if you measured my protectiveness, like they did the boy in the movie, then mine would be 98%, as well. That's my job-to protect my family's blind side. God help the person that tries to block me.

 

[GraceLuvsWDW]

Thanks. Last night I WAS feeling the weight of the world. Seeing my dd in so much apparent discomfort when there's nothing I can do is hard. I thought she might be getting sick but here's the thing: she has a long history of "stomach" pains when she feels stressed. Stomach and headache. It gets so bad that she screams and writhes in pain. Last night she cried herself to sleep and I told her I would help her any way I can but she has to tell me what is wrong.

So this morning I take her to school (after weepy resistance from dd). When we get to the library she starts to cry and I just couldn't leave her there. So I take her hand and go to the principal's office. I told her about our night and that something HAS to change here. She soke softly and tried to get dd to interact (and yes she did do the patronizing "it's hard for everyone" I anticipated), then dd starts to cry and tells her the noise is too scary and that her teacher moved her desk (again!) and that she doesn't feel happy here. Then the principal (made the mistake of) asking dd if she'd like to go to class and dd cried and said she never wants to go to that class again. So she called the counselor. The counselor invited her into her office and they said I could go and they would call me with the update (btw I like this counselor and trust her). She just called me and said that dd will do her work in counselors until she is able to transition to class and counselor will check on her all day. She said principal talked to teacher about moving the desks and they will ask dd where she wants her desk to be and then NOT MOVE IT. Thank God.

So, for now, I am feeling sad but hopeful that they are trying to do something. I mentioned to the principal this morning that dd needs a smaller class. She invited dd to eat lunch in the office with her.

Bookwormde, I am going to start making calls (TEA, etc) to file a complaint if no actual progress is made here. They have had the Neuro's eval and specific guidelines in dealing with dd academically and they are blatantly ignorning them all. This is causing undue stress and anxiety for both dd and myself.

DDM, that quote about stress is true.

Sorry I vented guys but last night was really bad.

 

[bookwormde]

We hare allways here and all do our fare share of venting. It is really hard when are kids are hurting and we do not know how to help.

Glad today is a better day.

bookwormde

 

[GraceLuvsWDW]

A brief update:

picked dd up from school in the counselors office. She was there all day. The counselor at least is on board and "very concerned" about the anxiety dd is manifesting. She said we can work day by day to decrease the anxiety.

DD was a bit better today but is still weepy. Very forlorn. I asked her if it helped to go to counselor and she said yes.

I will continue to stay on the school. I told the counselor all my concerns a to z and she seemed to understand my take. She said perhaps another school would be best in the long run. I think if there was an aide in the class it would solve much of this.

What are the obligations of the school to keep dd anxiety free? I have spoken to others whose children do half days or are in smaller classrooms. It seems this school is too small to have such accommodations. I need to do my research to find out just what the school must do to make the education possible.

Perhaps all of this will blow over but I was very firm in explaining that dd was "fine" over the break and it is clearly apparent that the school is causing the stress.

I posted to another board some things and was thinking of posting them here. It is our story from beginning to now. I had to write it down as I was feeling so overwhelmed today and it helped me to write it out. Perhaps I will find it and post.

 

[C&G'sMama]

Grace-
First

We're all here to vent and be vented to so have at.

When the counselor says she might be better at another school does she mean within the district or just another school. In other words, is the counselor being helpful or trying to get rid of what they see as a problem?

Not much advice, but just keep at it. You shouldn't have to but unfortunately that seems to be how it goes.

 

[bookwormde]

As for the school you first have to get them to acknowledge that she is Aspergers, has needs due to the disability that have special needs to get an appropriate education (that she qualifies for an IEP.

Creating an environment where she is safe, her sensory, EF and social skills needs and differentials are met and where she understood and not abused (by teachers and other children) are the first needs of all children on the spectrum. When this happens anxiety is typically very manageable. Directly trying to manage anxiety while the school leaves all the triggers in place if futile.

The size of the school has nothing to do with the ability or their responsibility to provide accommodations, it is about a school, which is willing to listen and learn about Aspergers and to put forward the effort needed.

bookwormde

 

[GraceLuvsWDW]

As for the school you first have to get them to acknowledge that she is Aspergers,

bookwormde

That will be hard since the principal told me that she has lots of experience in Asperger's and that she knows it cannot be detected nor diagnosed prior to 7-8 years old. I wanted to ask her if she meant ALZHEIMERS?!?!?!

Yes, that's right. She said THAT.

 

[C&G'sMama]

That will be hard since the principal told me that she has lots of experience in Asperger's and that she knows it cannot be detected nor diagnosed prior to 7-8 years old. I wanted to ask her if she meant ALZHEIMERS?!?!?!

Yes, that's right. She said THAT.

Oh, I'm glad you said something. My DS was diagnosed just past his 5th birthday. Apparently Dr. Yost at the University of Rochester medical center doesn't know what he's talking about. (Oh and all of the other MDs out there experienced in Aspergers) Thank God the principal does

 

[Kat77]

for Grace.

My heart is aching for you right now. We've gone through some horribly similar school years with DS9 and last year was the breaking point for our poor kiddo and we had to medicate... nothing else was helping. DS9 was/is perfectly happy when home and school was/is a HUGE stressor for whatever reason... It's hard to send them off to something they deem so traumatic daily. It was horrible to watch his anxiety skyrocket at school drop off. He felt physically ill from it as well. Right now, DS9 is on a low dose of Risperdone and Prozac. This school year has been so much better (knock wood -three times!) than years past.
I know a wonderful therapist (who went through this with us) if you are in the d/fw area.
I am so sorry. I know the place you are in and it is difficult. If it helps, just know others have been there. My prayers are with you.

 

[bookwormde]

If I remember correctly Grace has a formal diagnosis, where did the principles medical degree come from and what are her credentials to contradict the leading clinicians in the field (Aspergers can now sometimes be diagnosed as young as 2 and with proper clinical review the age of 5 is becoming the norm).

You have to get past this person and have someone in authority “educate” her. Until that happens your chances of making progress are near zero. Unfortunately dragging her through IDEA process is probably what it is going to take, unless you can keep going through her superiors until you find someone with some current knowledge about Aspergers.

bookwormde

 

[GraceLuvsWDW]

Thanks for all the helpful words. Today I am initiating a complaint against the school at the Office of Civil Rights for refusal to implement a 504 (if that is deemed appropraite-out OT said that's where I should start). After that, I am calling TEA and fining a formal complaint as well.

My dd opened up to me somewhat last night. It is really hard with our kids figuring out what is real and what is exaggerated or misinterpreted through the NV lens. However, dd told me that Coach at PE makes her run until her legs hurt and she cries and the coach doesn't allow her to stop. This brings back flashbacks of my own childhood. I was a very uncoordinated child and the coach made me do a chinup until I cried and she berated me for failing a fit test in 2nd grade. DD also told me that she was told she had to participate in a spelling bee on Friday.

Now, you guys KNOW the spelling bee thing is a huge NO NO. #1, she's already had an "episode" in the gym which publicly humiliated her. I already notified them that it was unacceptable in written letter so I have documentation that I advised them that calling her out publicly is not appropriate.

Now, what you guys may not know is dd has dx of Developmental Dyspraxia as well as a formal dx of Asperger's. We talk about the AS here but the Dev Dyspraxia is just as important as it has many impairments. Here is the description from NINDS:

"Developmental dyspraxia is a disorder characterized by an impairment in the ability to plan and carry out sensory and motor tasks. Generally, individuals with the disorder appear "out of sync" with their environment. Symptoms vary and may include poor balance and coordination, clumsiness, vision problems, perception difficulties, emotional and behavioral problems, difficulty with reading, writing, and speaking, poor social skills, poor posture, and poor short-term memory. Although individuals with the disorder may be of average or above average intelligence, they may behave immaturely. "

Here's the timeline:

May 2009 I wrote a letter to principal of this school detailing dd's issues to make sure they wre prepared for the next school year.

August 2009 I initiated Sp Ed Eval

October 2009 They denied all Sp Ed Services.
November 2009 They denied 504 Plan

The Coach/PE thing really burns me. I'm filing Civil Rights complaint based on that and all the rest! If they say they don't handle that I'm filing complaint at TEA.

Will keep you posted!

 

[DisDreaminMom]

Let's see. Where to begin...

My son was just 5 when Shands psych department diagnosed him with Aspergers, but they have a big ASD research thing there, and they are not school principals.

I am happy that you have an ally in the counselor. My question: why can't your DD just stay by herself with supervision until she feels ready to mainstream? In my son's school, instead of having aides, they have a separate classroom that is the Special Ed class. The kids in the program go to the regular classroom to start the day and they eat lunch with their peers and maybe attend "specials" like art, and music, etc. Otherwise, my son gets "pulled out" to go to the special ed class and works in a very small group on his academic stuff. When he was first at the school and was having problems with the noise and stress, the teachers worked super hard with the special ed teachers.

My son had a squishy seat cushion to sit on at his desk. He was allowed to put on a weighted vest during the day. At one point in kindergarten, the normal teacher went out and got my son a tube tent. She then told him that anytime he felt stressed he could sit in the tent. No child was to join him or bother him. He had a basket of "fidgets" to use while he sat at his desk. He was eventually allowed to excuse himself and walk to the Special Ed room if he was getting upset.

This was somewhat continued in first grade, though by that time my son either felt peer pressure or just was coping better. All the teachers so far have worked hard to help my son and that cooperation came from the Principal, who was a Spec. Ed teacher for many years.

Is he all better? NO! Does school still exhaust him? Yes! I even ran into his kindergarten teacher while on Xmas break. She said she was so happy she and my son's 1st grade teacher was able to get him in with the teacher he has now. Apparently, the other 2nd grade teacher is a military type and so disaster was averted. She said, "I wish we could stay with you and help make sure he gets the right teachers all the way until he graduates!"

Keep at the counselor. Bring her cookies and write positive notes about her and send them to the school board.

I wrote a letter to the editor in praise of my kids' school over the Thanksgiving holiday. It was the lead letter in the op-ed section on Turkey Day. I figure that overall, the folks at my school bend over backwards for my kids, especially my son, and they needed to know that I knew it. I wanted the Superintendent to have something to put in all their files, as well.

Like I said, heads eventually crack in the face off with the concrete wall. Which are you going to be, the wall or the head? I'd rather be the wall!

 

[GraceLuvsWDW]

The problem with my dd seems to be (which is quite common for ASD kids I believe) that she will not or cannot (I don't know which) tell the techers when she gets overwhelmed. She shuts down. Up til now I think her teacher views her as a quiet, compliant child with problems that are not overwhelming. My dd does tear up and withdraw during the school day but the teacher either doesn't have time or doesn't want to find out why. So dd comes home and acts agitated and weepy. With careful autopsy from me she will give me clues and hints as to what the problems are. But it takes time and I have a very good trust level with her. My dd has expressed to me she doesn't trust anyone at school. This leads to stress and anxiety where she feels she has to "make it through the day". Nevermind learning or having academic education going on, imagine if you were just trying not to break down all day?

The complaints my dd has expressed to me are numerous and exhaustive. At this time she "hates" school and I don't know if there is any hope for reversing the negative view she has of the school (you guys know how these kids get an idea stuck in their head and it's practically impossible to change it). If they had proactively addressed the issues in the way that you describe in your post perhaps all of this would have been averted.

I am trying to complete a complaint form now. They do not make it easy. They want me to reference the exact portions of IDEA that were violated. I don't see how anyone without an education could possibly go through this process! I have some calls in to advocates but if any of you could help me "brainstorm" on IDEA violations that have occurred let me know.

Thanks!

 

[DisDreaminMom]

I am trying to complete a complaint form now. They do not make it easy. They want me to reference the exact portions of IDEA that were violated. I don't see how anyone without an education could possibly go through this process!

It is the saddest part to all this. God help you if you can't jump through all of the hoops and get the help you need. I would say the current system is racist, elitist, and discriminatory. And I'm not one to normally say stuff like that. But it really is. There are kids that are just thrown away simply because their parents can't navigate the system. Cogitate and then go see The Blind Side (argument #2).