School year not off to the best start

The school year for dd1 is not getting off to a good start. I am not sure if I like her teacher (loved last year's) - I can deal with that. There is apparently a new diagnostician AND a new OT, so everything is FUBAR'd - and I can NOT deal with that. So I'm just pissed.

First issue is her stupid planner. No one is using the damn thing right - I know dd1 doesn't, which is WHY her accomodations state that her teachers are to be writing her HOMEWORK ASSIGNMENTS in her planner each day. So what are they doing? Having the kids copy down the assignments at the beginning of the day. Right, that really helps me know what was completed in class and what needs to be done at home O.o And no, Ms Homeroom teacher, cramming what you've assigned as homework in your 2 classes into the very last box of the planner, in cursive that I can barely read, is NOT HELPING.

Thank you very much for dating some papers with a due date but not putting the due date of assignments that are not worksheets, in the planner. It is so nice to know that something I forced my daughter to work on through her tears for 4 hours one night wasn't due for A WEEK. FARK YOU.

*deep breath*

DD1 is supposed to have a ton of stuff in each classroom or carried with her (assistive tech). That's to include an Alphamaster, bands on the front legs of her chair, a weighted lap pad, a beanbag seat cushion thing, a "Cool Down Area" with sensory input devices, medical tubing to cover her pencils, a slantboard for writing, and access to a computer if the Alphamaster is not sufficient for the assignment given.

What does she have as we're to the middle of the second week of school? Medical tubing. They've known for months now, these are existing accomodations and nothing new yet except the Alphamaster which the new OT recommended last week.

*bangs head on desk* Not only that, I am getting a run around about the ARD I requested.

I requested it verbally on 8/23 to the assistant principal. I gave the new diagnostician all her new IEE reports and requested it in writing with those documents on 8/27.

I received a call today from said diagnositician for me to come in to speak with her and the LSSP on Thursday (not an ARD, just an informal meeting). And that "we might go over some dates when we can have the ARD".

It's been so busy..

She has one evaluation scheduled for July 18th via someone her grandmother wanted to take her to in WF.
She has an eval with the child psych here at the end of the month, the one that specializes in Asperger's. I've gotten back the tests she sent in for her current teacher to fill out as well (school ends tomorrow).

I found a Social Skills group and a Sensory Motor group for her, both at rates we can squeeze out if we're very careful (I assume we can eventually use insurance for some therapies if/when we have a medical dx, but for now private pay is it) that will work with the school schedules next year and around therapy with the Spec Ed center and the child psych.

I also have a lead on a karate place that's local that specializes in special ed students and is affordable. They focus on concentration, observation, centering, balance, breathing, and coordination.

So hopefully that will all fall into place after the summer. Also hopefully, by the end of summer, we will have a DX to then call another ARD for and bring in the advocate to start fighting for more help for her via the school/accomodations.

I also obtained a letter from her montessori teacher from the year of her first evaluation with the ISD (who was never offered screenings like her public school teachers were this year) and have one promised by the owner as well. Also her complete school records from that year and I've collected and collated everything from pre-k to present as far as the school records go.

I still need her birth hospital records to eventually follow up with a dev ped if needed, her complete records from the inpatient center in '07, and records from the 2 other psychs we had consulted to add to her "Binder of All that is C related".

She did not qualify for the LEAP group (gifted) but I have concerns about that I will address next year as well. Basically I need to find out if her IEP should apply to the LEAP testing as well - her IEP allows for extra time on tests as well as verbal reading of questions vs written. Her LEAP scores were MUCH different than the results of all the testing the multi-disciplinary committee did for the ARD - like polar opposite different.

They have to score 6/8 to get into the program. She got 2/8. Now that her TAKS results are back she should have 4/8 (She achieved Commended in 2 areas, and missed the third by one freaking point). If they allow extra time on the timed math portions I believe she can hit the 6/8 and should qualify for "provisional acceptance". Her teacher was quite shocked at her low scores.

I realize we are asking for a lot for a special ed student to be admitted to the gifted program (in terms of what that teacher can deal with in her LEAP group) but I don't believe the two are mutually exclusive, and I do believe that she IS gifted in certain areas (actually many areas, but at this age she is struggling with basic math memorization/timing, yet can work complicated problems in her head and get the answer right without knowing how to show how she did it). She would really benefit from the program IMO if we can get it.

Spec Ed Center interesting

Had counseling last night, and finish Love&Logic class tomorrow.

I told the fam counselor about the email from the gym teacher and my concerns, and she talked pretty in depth about some stuff she suggested we ask to be in her accomodations at this next ARD.

Privately, that psychologist told us right before we left that she was shocked dd was ED and not AU O.o then told me I should really hire an advocate..

okay when an employee of the ISD working the special ed center tells me that.. yeah.. how fucked up is this?

Anyway. She pointed me to some Social Stories scripts to go over with dd1, and gave me some input on the new behavior and chore chart we're going to try. Last night's topic in group was time outs and practice academies, so we'll be focusing on that this week.

Gym incident today

I received this email from her gym teacher.

Quote:

Hello Mrs. M. Catlin had some behavior problems today during P.E. I believe the defiant and unnecessary behavior started because she didn't have proper shoes for class. 1. I asked Catlin to have a seat on the bench so the soccer balls wouldn't hit her. She refused to move from my office and was clinching her fists. After asking her numerous times to go and have a seat, I placed my hand on her back to guide her towards that direction. As this was happening, Catlin decided to throw her elbows...one hitting the door frame and the other almost coming into contact with me. Coach Hooper noticed this from across the gym and came to help during this situation. 2. Eventually Catlin went over to the bench with her oops letter. During this time she was growling and stomping her feet causing a class disruption. She then proceeded to crumple it up and throw it on the floor and bench numerous times. I finally asked her to please unwad the paper and hand to me...she threw it at me...so we had to practice the correct way to respond to the teachers request. This went on for an extended period of time. 3. Coach Hooper and I asked Catlin to go to the bathroom and wash her face, thinking this would help her calm down. She was not happy with this suggestion and started to scream and growl more. Again, after numerous requests, she eventually went to the bathroom, came out and stood next to me for the remainder of the class period. During this time she was still clinching fists, growling, and would not respond to my questions about her behavior. 4. At the end of class, I asked Catlin to come stand by me at the gym doors so we could talk with Mrs. Barentine. She said the she didn't want to move and yelled out that she didn't want everyone looking at her. I then told her we could wait outside the gym and wait for her teacher there. While we were sitting outside, talking with Mrs. Barentine, Catlin didn't want to apologize so she started banging the back of her head against window. After being told to stop or we would have to stop her from causing injury to herself, she still continued. After Coach Hooper placed his hand on her arm to move her away from the window, she stopped. 5. When Catlin finally apologized, after being told repeatedly, she refused to look at Coach Hooper or myself rolling her eyes up and talked in a deep growl. Please feel free to contact me with any questions or concerns. I just wanted to make you aware of our observations.

In the past, I've responded by acknowledging the email, letting them know we will be discussing it at home, etc.

I feel like I'm not doing enough, but I don't want to cross the line to becoming a PITA for her teachers. I do expect Caitlyn to be following the rules but I DON'T know how much control she has during these meltdowns. I feel like everything is being labeled "her behavior" due to the label she's got now, and that she is being forced into more transitions, power struggles and triggers now than compared to before her educational DX where they *seemed* to be focusing more on NOT setting her off, being more gentle correction, etc.

This is what I replied with this time:

Quote:

Thank you for informing me of the events of today. I was under the impression that she was keeping tennis shoes at school for "just in case" she forgot. I've asked Mrs. XXXXX to let me know if those are no longer there. I try to ensure she is wearing the proper footwear on gym days. We have a board at home in her "zone" to remind her on which days gym is and that she needs to have her tennis shoes. I know she is not allowed to participate without them; what else is said to her at this time, and is there any additional punishment? We will address the rest with her at home this afternoon and then next week with the family counselor. Her next psychology appt is not until May 13th but I will bring this letter to that Dr. so she is aware of the escalating behavior and particulars. Was any praise to correction ratio used, de-escalation, etc? Trying to transition her to different places during a meltdown situation will impede de-escalation as we have found (moving to the bench,to the bathroom, at the gym doors, then outside the gym). I myself have had to come in to remove her from the building on two occasions within the past month and it is an intensive process and power struggle so I sympathise greatly. Have Ms (PRINCIPAL) or Ms (DIAGNOSTICIAN) or the counselor (I'm sorry, I forget her name) been made aware of the incident, including the head banging? Also on the final point below, #5, please do not attempt to force her to look you in the eye as she is very uncomfortable doing so and finds it hard to remember her alternatives during or following a meltdown (she has been taught to look at the ear or nose of the person addressing her to show that she is listening and paying attention, since she finds direct eye contact disturbing). Holding a finger up towards your face at chin level, but not pointing at your eyes, can serve as a focus point ("Caitlyn, look at my finger, I need to know you are listening to me"). You may contact me at any time at this email address if you have questions or need to relate anything, even if it seems minor, as we do try to bring all of these things up with the counselor and they help greatly in pinning down where she is having issues, what coping skills she may need, and what her triggers may be. I really appreciate it. You may also contact me directly at XXX XXX XXXX (home) or XXX XXX XXXX (cell) if my presence is needed to remove her. I am willing and able to be at the school when a meltdown occurs to assist in de-escalation if it is needed.

Is this HELPFUL for her teachers, or too much to handle? Am I crossing the line from concerned, supportive parent to "ZOMG coddle my precious snowflake", or is this more the type of response that they need to figure out how to handle her?
~~~~~~
Oh and I'm really torqued about this line:

Quote:

defiant and unnecessary behavior

This is a gym teacher. She isn't qualified to say that! And that line is specifically what is setting me off to thinking that they aren't trying as hard now that she's labeled ED.

So today sucked ballz.

Caitlyn has been having really bad stomach pains/constipation issues for *years*. It's not been checked out beyond belly palpitation at the ped (no, IDK why) but we decided to try some diet elimination. I'm happy to report that going dairy free has gotten rid of the pain!!! It's been a little over a week and she is feeling MUCH better.

Step 2 is that we're going to take a day next week to give her Lactaid and something containing milk and see if the pain comes back, or if it's a lactose intolerance. If it does come back w/the Lactaid, we'll go back to pulling all dairy.

She is putting us through HELL with this. I never thought she ate THAT much dairy but it appears that she does especially when we have to consider bread and other items with dairy ingredients. She can't have pizza, mac n cheese, anything and it's killin her. I've found soy or other alternatives on some stuff, but let's just say mac n cheese is not happening with zero milk

Anyway last night we let her pick dinner since she felt so limited and she wanted fish from LJS.

SO, since dd2 (younger one) hadn't had dairy all day that I knew about and can usually tolerate small amounts of milk, I let her have about 3oz of cow milk since she begged for it with her hushpuppies.

Big, farking, mistake. By 7pm her nose was running. By 8pm a restricted cough was going on. We gave her Benadryl and she slept off and on through the night with me checking on her. Morning came and she woke up saying "Mommy I need to go to da Doctor" with a low grade temp.

Ped's opinion is we need to pull her off ALL milk now as she appears to have a "milk protein allergy" vs a "food intolerance". Re-ordered her RAST test. Didn't give me an answer on why she hasn't reacted at all to yogurt, mac n cheese etc just pure plain cold cow milk in a cup? Any ideas on this? I am SO confused.

Almost $150 later we have some new allergy meds for her, a nebulizer, and she's on breathing treatments every 2-3 hrs today.

Gah cowmilk I loathe you right now.

Then right when we got home I got call #1 from dd1's principal that she was having a meltdown. I had hoped she had calmed down and gone back to class, but I got a 2nd call at 1 to come pick her up. UGH.

Enter hell child. She screamed and hid from me, ran away from me, I had to carry all 85lbs of her to the car kicking and screaming while the principal held dd2's hand for me to cross the parking lot. It was SHEER HELL. The cause of all of this? HER SOCKS WERE BUGGING HER and then her teacher took something away from her and it just escalated.

:headdesk: :headdesk:

Yesterday she had her orthodontist appointment, and they want to do a palatal expander for her upper jaw, then partial (old style) braces, then a retainer. Yeah, the chances of dd1 tolerating any of that in her mouth are practically ZERO. I have no clue what we are going to do.

I *want* to wait till her molars are in but her palate hasn't fused yet, so she can at least try the Invisalign option and it won't be as hellish for her, but apparently waiting might start to involve her lower jaw too because of her crossbite? WTH do I do?

I feel like we are bleeding money lately and there is soooo much I can't do but a bit at a time, especially the sensory stuff the OT is recommending. I agree with all of it, I want to get it all for her, but we're looking at beacoup $$$$$$$ and I just haven't been able to swallow it down and put that much on the cc we're still trying to pay off. Right now we are just barely breaking even and I have NOT been doing much clothes shopping, etc beyond needs vs wants. Are there cheaper sources for some of this stuff I'm just missing?

I am so so sleepy and trying to stay awake till my stepdad picks up the older 2 for the weekend and DH is home to watch dd2.

Duh duh duh...the ARD.

Bleh. I'll try not to ramble, but I'm really burnt out tonight but I want to get it down before I forget even more stuff kwim.

First, some of the mistakes were mine in some of the forms we filled out. I'm bothered by the fact that she just rote-copied them instead of asking me "you checked both of these for a strength and a weakness, was that a mistake?" months ago. That just boggles me, it would have been easy to ask at any time during the TWELVE meetings I've had where she was present. Submitted my corrections now, anyway. She offered no apology or explanation for the school information being completely wrong (it said none of her previous schools were accredited, all are; that she had 1 "maybe 2 years" at preschool, she had 3 including kindergarten; and that she first attended THIS school in third grade O.o - um, no, fourth - this current year. That's a pretty blatant records mistake and shows shoddiness IMO).

Second, when I asked why certain statements were made in the report that were untrue, she said "that's what your test results showed". Period end of story. This is important to me because we were really strict in the questioning - if it happened even once, we answered "sometimes" or "rarely" as applicable instead of "never". To me, "never" means exactly that, "never". Apparently that REALLY masked some of what we're concerned about like social skills. But we were not asked to elaborate or explain any of our scaling answers to be filed with that report - this becomes important on a later point.

The speech therapist was not present and had to be called at the other campus she was at. There were 2 particular tests done. The CASL (examiner with dd) showed she scored VERY high on pragmatic language (understanding sarcasm, literalness vs figurativeness, etc) but the CCC2 that her teacher filled out scored her at the 1st and 2nd percentiles on pragmatics. I always expect SOME discrepancy on different tests, right, but they shouldn't be completely different ends of the scale, no?

All we were told was "well, they were 2 different tests". And then her teacher apparently had turned in some notes of explanation and other stuff WITH the CCC2 that the psychologist considered in the findings! We had NO CLUE we could have done that with the AQ we filled out ugh.

It took 15 minutes of us going back and forth to get nowhere on that. Either the CCC2 is wrong (her previous evaluation using it she scored VERY LOW on pragmatics), or she tests well but can't use those skills in the actual social situations for some reason. We got nonresponse on that.

We asked about the ADOS - the actual observation by the "Autism Team". Turns out the vast majority of that isn't them observing her in her normal surroundings - they pull her out of class, then ASK HER how she would react in certain situations and for them to show her stuff. When I asked what peer interaction was observed, we were totally brushed off by the psych, though the teacher later mentioned in passing that she apparently WAS observed on the playground? We already KNOW she does well with adults and much younger children, we do NOT understand the peer difficulties. I don't get it??

On the OT - who also was not present - we asked why there were some things mentioned that needed addressed without suggested therapies, accomodations, tools, or goals. She grips things too tightly till they break, there are gross motor concerns in PE, etc. Didn't get anything from that beyond her afternoon teacher stating she had a pencil grip she could give her O.O They mentioned she does better on the computer speed and confidence wise than handwriting and that could be used as a classroom tool, but she makes many more errors on the computer. A keyboarding class being provided was never mentioned though (wouldn't that then allow her to use that tool most effectively??)

Some other things that came up - the psychologist leaned heavily on the inpatient stuff from 2 years ago, showing she has a "history" of anxiety and depression. We NEVER agreed with that when it was going on and was why we kept seeking help! AUGH. I'm so pissed that 2 years later that is still biting us in the ass.

The psychologist said that even though the tests showed she was NOT depressed OR anxious (2 different tests, she scored right in the middle of average/normal) that her findings were based on what she SAID outside of the test during taking it? And that she thought she was giving the answers she thought they wanted as opposed to the real ones.

I am just WTF at this point. So she pretty much admits that C manipulated test results in her opinion, but I notice she doesn't consider that C manipulated all the adults in her ADOS examination/observation... and CANNOT do it with her peers. This is the crux of the entire issue and this lady won't even address it!

No mention was in the report and at this point I didn't want to bring it up because the meeting was disintegrating at this point - I'm half proud and half depresssed about it. We've been super successful in coaching DD1 to social situations SHORT TERM - she knows how to fake eye contact, how to respond to specific phrases (lots of them), manners, etc. If she WANTS to impress you, she will bowl you over. She CANNOT keep it up though - hence why she can't do it routinely to the kids in class or her teacher, or with her siblings or other family members. We see her too often. They only saw her for a couple of hours total, split up at that. She makes a GREAT first impression, so to speak, and then it all falls apart.

When I asked the psychologist how many girls WITH autism she has seen, she refused to answer for several back and forths and she said ultimately "within the population ratios". Nice non-answer eh?

I do not deal well with authority figures or confrontation unless I "have nothing left to lose" in person. So this was really hard on DH and I. We tried not to be adversarial, and signed that we formally disagreed with the ED label and wanting more time to consider the proposed IEP. We will meet again in a week which is going to be really busy for me as I try to get more info to present/get the advocate at the meeting/etc etc etc. I'm hoping to have SOMETHING from the dev ped by then. If not I'm not sure where we go past there. I'm talking with DH about how far we are willing to fight this/sink $ into it etc.

I guess that's about it?

Meeting with the Autism Team

We had our meeting with the Autism team last Thursday. I don't THINK I updated about it so will do it again or whatever lol.

My MIL, FIL, and DH went with, this time. I wanted (no, NEEDED) to show that it's not just ME or my "fault" or in MY "head". We went over a lot and did some sort of screening (rating things 0-3) but won't know the results of that till the ARD on 2/27.

I am slightly depressed over it. I threw my back out just moments before MIL and DH got to the house and was in literal screaming agony. I made it to the meeting but wasn't able to go over stuff with them before we left.

The "team" consistently tried to get us to rate her lower than we were (ie, not having the behavior in question that often). I'm worried about how bad that is going to screw us. DH argued with me at one point in front of them - we fought over this later that night because I was so upset that he cared more about being "right" than her getting the help she needs. I hate this. Even MIL was trying to elbow him and relating a story about when a particular thing had happened and why she'd rate it a 3..

Some questions I felt forced into certain answers. Example - rate a 3 if the behavior happens 4-6 times in a 6 hour period. The question was something about social skills with peers. Well - she's never IN a social situation for a 6 hour period with other kids except for school, and I'm not there! How could I answer that correctly??

In other news.. she made the A/B Honor Roll for the semester. <3 <3 <3

We celebrated that I've been trying to tie her behavior chart more to direct consequences and her allowance rather than whether or not she gets to do something. Like, if she doesn't clean her room, she doesn't get grounded but she doesn't get her points for doing it and doesn't get her allowance. She can still go out and play the next day. It seems to be working better this way and it's affecting us as a family less - previously we'd all end up havin to stay home or one of us had to stay with her while the rest got to go do X fun thing. I dunno how it will work long term but we're trying it for now.

She's also expressed a lot of interest in singing and acting, so I'm looking into a workshop for her (there's a local children's theatre) and during the summer I'll take her to karaoke with me as her weekly reward.

I hope we find something out on 2/27. We've waited so long