Operation School Recognition of Autism: Success

We have the AU label (Autism) as Caitlyn's primary disability now with a secondary disability of ED (Emotional Disturbance).


I should say "YAY" but I'm not in the right headspace for that right now. I am grateful that this part of our "war" is over, though the treaty still remains to be worked on a bit.


We now have access to the FOCUS group - but they don't meet again until February. We will be getting only 5 in-home parent training sessions of 30 minutes each based on some 2 minute "scale yourself" thing I was given over the phone. Right now I am dissappointed in both things - I fought for them so hard and it's like waiting and waiting for a christmas present and then opening a pair of slipper socks, size medium.

I promise the wait was worth it

My apologies for not updating sooner. My mom has had 2 surgeries in the last two weeks, following our Halloween party, and I have had zero time to update the blog. That's over now and here I am!

I bring GREAT news. I was just on the phone with one of the people from the autism team at Caitlyn's school. She was calling to reassure me that yesterday they performed the ADOS, and that they were all in agreement that she is on the spectrum. After my parent interview tomorrow and some forms from the teachers are all tabulated, they will make a final call on whether they believe she meets the criteria for PDD-NOS or Asperger's, but both in Texas are coded under the AU label. She WILL be getting the AU coding we need for the supports *they* saw she so desperately needs - including in-home and community-based training with hygeine supports.

I am not ashamed to tell you that I have had tears of joy running down my face since that conversation. To know that finally they have seen what we are dealing with, what Caitlyn is dealing with every day, and that they are going to support her and work with her to get her exactly what she needs.. this is a pure victory for us. It is bliss. I am so, so happy and grateful right now, and relieved.

It's been a three year journey to the proper diagnostic coding for the school, and to know that part of our overall journey is finally coming to a close is.. there is no feeling like this. I don't have words to describe it.

As someone mentioned on Facebook to me, it's bittersweet knowing we're getting the label, but that "she has a label". I disagreed; I've already felt that and processed it from her medical diagnosis. This particular label from the school district, I don't feel bitter at all. This doesn't define her as a person; this just gets her the help she needs. Victory tastes so, so very sweet.

Limited success at ARD/IEP an re-evaluation commencing

I have mixed news to report. First of all I am just so relieved that the meeting is OVER and I can relax for at least a few weeks while we have holiday stuff going on. Unfortunately the re-evaluation results will be in December 6th at the latest, meaning more holiday things occuring at that point as a complication along with the school's winter break.

So, on the plus column we have received:

Additional accomodations (now all recorded in her IEP so I can stop referring to "the minutes from the last ARD" yay):

Environmental/Accessibility:

1. Seat close to board and away from distractions
2. Preferential seating near teacher
3. Cool-down areas available

Instruction:

1. Reduce work without reducing skills (homework reduction, much discussion on how to phrase this)
2. List due dates on all assignments
3. Chunk lengthy assignments into smaller units

Adapt Materials:

1. Set of textbooks for home use
2. Provide written copies to reduce copying from board
3. Access to technology w/writing assignments

Testing:

1. Small group administration for major tests

Grading:

1. Extended time to complete assignments

Behavior:

1. Allow for frequent breaks as needed
2. See BIP - encourage use of code word when being teased
3. Organizational help w/binder including notes/homework

Assistive Technology was considered and found to be necessary to provide a FAPE.

Positioning/Seating:

1. Sensory items as needed as provided by OT
2. (slantboard, cushion, fidgets, chewing items, etc)

Motor Aspects of Writing/Computer Access:

1. Access to word processing programs at teacher discretion

In addition, Caitlyn will be given 50 minutes of special educational aide access per week; 20 minutes per month of OT; Direct daily access to AT (unlimited); 20 minutes special education counseling bi-weekly. 

Major news is that in the interim while she is being re-evaluated for educational AUtism, we have been given access to the FOCUS group by the Director of the Special Education Department who attended the meeting! (YAY!!!!)

I'm dissappointed in the delay with a re-eval and feeling negative about their results if they persist in using the ADOS as their only overriding testing. I can only hope that they correct their rectal-cranial inversion and address the "whole child" aspect of what is going on with Caitlyn involving *all* of her behaviors as diagnostic clues rather than persisting in isolating the behaviors.

My child is not broken and does not need fixed. My child does have difficulty functioning in daily life and needs to be taught and trained for appropriate coping skills, self-care, and social interaction. I want them to stop acting like she is "misbehaving" when she is manifesting a portion of her disability. Bleh.

 More updates later and my thoughts on the accomodations we received; right now I have a meeting to attend. Thank you all for thinking of us!

Very very nervous

I happen to have a panic disorder that is controlled with medication, and my anxiety level is through the roof today as the IEP/ARD approaches. I feel confident that I have the facts I need to speak with, and I have utter confidence in our advocate to advocate effectively for Caitlyn's needs, but going to the school and entering a small cramped room with 10-15 professionals who are employed by the ISD vs the 2 of us is psychologically daunting to say the least.

Trying to remain calm, and have some as-needed medication that I may definitely take today. I hate that my own disability has the potential to impact my ability to advocate effectively for my own child.

We (my husband and I, the advocate and I) have gone over the Agenda and tweaked it multiple times but I am nerve-wracked that I have forgotten something important, mis-stated something important, or will do or say something that will wreck the process/put the focus on how I worded something or a demand I've made vs Caitlyn's need for a FAPE with the correct label and support.

Please keep us in your thoughts this afternoon. As always, I am attempting to hope for the best and prepare for the worst.

iPad adventures in printing!

I hate that I've gone so long between updates, but a lot of things have been going on and my time has been limited. I'll try to do better (promise!). My husband went to Florida for a week leaving me alone with our 3 kids and a lack of free time; our IEP is tomorrow and I've been buried in calls and emails from support personnel and our advocate in preparation; and we're hosting a huge Halloween bash in 12 days that we're decorating and cooking for.

So, about the iPad. It turns out that there is no built-in print functionality, and any printing function is designed to be done wirelessly, even with the add-on purchasable "work around" apps. Yes, wirelessly. Which Caitlyn cannot do at school as no student devices are allowed, by district policy, to connect to the school's network.

Never tell me something cannot be done or a workaround cannot be found! I have now pinned my hopes on another addition, with another group of "I've already done this in case you're concerned about it".

Clear internet offers an iSpot for $25/month with no contract. Caitlyn would do her work in class on AwesomeNotes until she was done, then turn on the iSpot and turn on the iSpot app on the iPad (clear as mud?). We trained and she knows how to sync AwesomeNotes to google docs using wifi now, within 20 seconds or less. (So consider one minute total to turn on the iSpot, app, go back into A.N. and hit sync). Then she can shut everything off and put it away carefully.

She can then walk over to the classroom computer, pull up Google Docs and sign into her account, and pazow! Her A.N. docs are magically on the computer now and can be printed out. So now I wait to hear if the use of the iSpot will be allowed in order for her to print.

Things I've done in advance of arguments against it:

• - Safari does not appear on the iPad at all
• - the Apps store cannot be accessed
• - in-Apps purchases cannot be made
• - Itunes cannot be accessed
• - Autocorrect and Autosuggest have been turned off so she can use this for spelling tests and papers.

In effect, all she can do is sync AwesomeNotes with Google docs. This reduces the functionality of the iPad while at school, but I can lift her restrictions while at home. The addition of the iSpot also means - in theory - that in the future she can take the iPad on field trips or to conferences, therapy, etc and have access wherever she goes - and we saved by not buying the 3G version of the ipad PLUS the Clear iSpot is much cheaper per month. Score!

Please cross fingers for us that they will accept this workaround for the ability to print! It's probably my last hope as they seem to be looking for any excuse to deny this assistive technology.

Is this the "FINAL" approval? IEP update as well

Just got off the phone with the assistant principal. We went over several things for the upcoming IEP meeting, and she did say they were clear on the iPad for a trial basis. (WOO!.... if I don't get another email saying oh wait one more mysterious person has to approve....)

Regarding adaptive PE, she said the person that does that came in to observe Caitlyn in general PE and said she was "right up with the rest of them". I have asked that this person contact me directly - I have no idea what they were doing in class at the time, what skills were observed, etc. At this point in time I think an actual, full physical evaluation should be done before she's out of elementary grades, but I will wait to hear.

The school plans to do a re-eval "on the basis of" our reports from this summer (IE her medical dx). Sigh. I know this is expected; I just hate that it means yet more testing and yet more waiting. Again. I'm not even sure if the FOCUS group is offered in middle school; if not, that means we totally miss it (the first meeting was this past Wednesday iirc).

Thoughts on points by Ari Neeman

http://www.wired.com/wiredscience/2010/10/exclusive-ari-neeman-qa/all/1

I wish I lived in a world where Caitlyn was simply accepted for who she is. Unfortunately, it's a pipe dream. Bowling for Soup's song "High School Never Ends" remains true in all aspects of life I see daily; people are judged on their looks, their mannerisms, their etiquette, their social standing, their peer group identification, and above all on their social skills.

I agree with some of Mr. Neeman's stated goals and ideals - stop trying to make Aspies into regular kids, because they are not. Stop focusing blame on the cause or the search for a cure, and focus on treatment and support for those living with autism.

Personally, I see this like I do our fight to have Caitlyn use an iPad at school. It's farking ridiculous that even though we're paying for it out of pocket, buying the apps ourselves, training her on all of them (and then training her teachers if all goes as planned!), weeks are being wasted in arguments and all the levels of approval needed to get this into her hands in the classroom, even though it has already been shown to directly and easily help  children on the spectrum. The school will pay for a crappy Alphasmart - by the way, this is an Alphasmart:

It looks a lot like the Brother word processor I used as a child in 1990. Yes, TWENTY YEARS ago.

This is what Caitlyn is freely allowed to use. Doesn't it look so EASY and intuitive to write full papers on or answer math problems? I'm sure it would really help her keep up with her seperate, handwritten student planner that's causing tons of issues too. /sarcasm off

Gosh I'm just not in a great mood tonight. I will say kudos to Mr Obama though for getting someone who is affected by the condition on the disability counsel. I feel for Mr. Neeman, who has received threats and vast anounts of criticism; many of those criticizing sound like someone complaining that because someone is only a paraplegic that they cannot understand the life of a quadraplegic. There are many examples, Temple Grandin being one of many, of people who have autism who are able to tell us in their own words what is going on in their heads, that give us a glimpse into what MIGHT be going on in our chidren's. Sometimes just having a clue is all we get; our children for whatever reason can't communicate it to us (whether due to a communication issue, a vocabulary issue, or just the ability to see cause/reaction).

And I will take all the clues I can get, thank you very much. I would like to buy a vowel, please!

Yet another iPad update

After I posted above successfully arguing for a trial with the iPad, I was contacted the next morning and told it was NOT officially approved yet and they will be getting back to me after a mysterious supervisor approves it. I'm quite irked, because if the AT "Team" and the school administrators signed off on the trial as I was told, who is this mystery person that has to be consulted, and why have they never been mentioned before now?

Unfortunately, I'd already gone out the night before and plopped down $1032.41 to purchase the 32mb, wifi only (no 3G) model, with a cover, screen protector, care coverage, and a $100 itunes card to start getting some apps with.

So for now, we're going to start using it at home with our debut on "FirstThen".

We'll see how she does with her homework, chores, and hygeine set up on this for the next week. This will also let us become familiar with the apps and be prepped to bring the iPad to the ARD/IEP meeting with us for them to check out if I can make it in person. I've also emailed to see if the OT could meet with me before the IEP so I can show her it and the programs.

Have you used some special apps? Does your Aspie use an iPad? If so, what do you like or use best?

Update: iPad permission success!

The AT team has agreed to a trial with the iPad! :) I'm so very, very excited! I hope this works out as well for Caitlyn as I think it will, and am really looking forward to using some of the apps I've been checking out!

Our first family counseling meeting of the year

Did not go very well. Caitlyn was not having a good day and spent most of the session spinning around in her chair, crawling under the conference table, or playing with various items in the room. She did not want to participate in the discussion at all. I hope that next week she will open up some more.

DS (Dear son) was pretty honest about how he is feeling about things. He is jealous of the time my husband and I have to spend on her, especially daily with homework and hygeine. This really brings home to me that we desperately need a reduction in homework accomodation, because we should be spending more time with DS or doing family things.

This year is a new counselor for us and we only get 6 sessions, so I'm not sure what to expect this time around. Next week will also start some new parent class offerings following counseling, and we're going to do a trial of putting DS and Caitlyn in the middle school youth group instead of elementary based on the Spec Ed center's recommendation (they have quite a few 6th and 7th graders show up for the later class, versus the current class being mostly k-2nd and so not "peer" for Caitlyn to have social training with). I hope it goes well.

Turned down on the iPad

Very discouraged right now that the AT Team has turned down our request to use an iPad for Caitlyn instead of the Alphasmart. I have written back and urged them to reconsider in light of her full disability needs, including behavior, rather than simply denying it based on that the Alphasmart will do word processing.

Where is the line between disability and tween attitude?

This is something we struggle with daily. I don't consider myself a "precious little snowflake" parent, but I find it hard to judge when Caitlyn is being purposefully defiant and when her disability is interfering with her doing something. It can be anything from making her bed, to remembering to bring something specific home from school. This week alone she left the camera her Big Sister bought her in her desk at school, still has not brought home the Tree Ring assignment from her Science Journal, and we had to deal with a major meltdown over cleaning her room Friday night so that she could go to a special ed camp this weekend.

I am just at a loss. I feel like if I continue to expect her to receive no penalty on this tree ring paper (because I've asked multiple times now for the teacher to make sure it's in her binder before she comes home) that I'm helicoptering and preventing her from suffering the natural consequence of an action. On the flipside, I have asked the teacher multiple times, and without that grade, Caitlyn's failing science this six weeks so far. What to do?

The importantance of clarity in remedy seeking

Two weeks ago, Caitlyn had her first states and capitals test, which involved 4 states (8 items to remember). She made a 100 on this and we spent 2-3 hours that week studying it (a reasonable time for us - memorization is one of her weakest skills.)

Last week, they were supposed to do 11 states (22 items to remember). This is beyond her threshold, as I've learned. The way the testing was designed was that students were given a blank map with the state boundaries drawn on, and were to write all state names and capitals from memory. This is 5th grade, by the way. She froze completely and simply sat at her desk until the papers were collected. She was assigned a make up test for the following Monday; we spent a good 7 hours studying (in addition to what we'd done through the week). She again made a 100 on the makeup test.

I emailed her teacher for that course and explained what had happened (her anxiety, threshold for memorization etc). I asked if she could either be given extended time for complex memorization testing, or if it could be broken down into smaller chunks (10 items or less). I did not expect a quick reply, and since this is not yet included in Caitlyn's IEP, I wasn't sure if the teacher would go for it.

This morning, to my immense glee, I received an email that the OT had prepared alternative testing for Caitlyn; she'll do 2 tests for each 1 unit planned (half the amount at a given time), AND will have a word bank to use for prompting herself. WOOHOO!!

I feel confident that she will continue to master the material and succeed in the curriculum if we continue to receive this type of support/accomodation. She is a very smart child; sometimes she just needs a little extra time or support to succeed.

On the subject of private evaluations - Just Do It

Even if you are 100% in agreement with your school district's evaluation of your child, ask for an IEE. (State reasons for disagreeing, though). Why? Think of the evaluation as a consent to a major surgery that has the potential to affect your child for their entire lives. Even if it all sounds good, it's so big that it's scary - don't you want a second opinion?

The school district must pay for an IEE (or show cause for denying you one, which you may need later if you ever end up in Due Process Hearing.) If they say "no", insist that the denial and the reason for the denial be noted in the minutes of the IEP meeting.  They can provide you with a list of local professionals who they have deemed qualified to do them, or they can provide you with a list of the qualifications a professional must have for their IEE to be acceptable if you choose your own professional. You can request one per year if I recall correctly. I will confirm this and edit to add the link confirming or denying it. The IEE may agree with, disagree with, or ADD TO the school's evaluation. Maybe they agree that your child codes for Autism, but they also catch that they code for ADHD, ED, a learning disability, or other co-morbidities that will open more doors for you in accomodations later down the line with the schools.

Now, go completely outside the district. An IEE is still an EDUCATIONAL evaluation. It may not provide you with a medical diagnosis (depending on the professional involved).

If you have insurance, make an appointment with a developmental pediatrician or child psychologist. Try to find a CP who specializes in or is familiar with Asperger's/Autism in girls if at all possible (if applicable, ie your child IS a girl...). This will get you a medical diagnosis. If you don't have insurance, scrimp and save as you can and try to find someone that works on a sliding scale basis and may only need to retest certain areas of the evaluation (ie you know your child doesn't have any cognitive problems/learning disabilities, but you want them specifically screened only for Autism/Asperger's/PDD.) A medical diagnosis will lead to insurance coverage of some therapies and assistive technology, or you can apply for Social Security Disability based on it (long story there and it does take time, sometimes years) that may eventually provide your child with insurance that may cover therapies or assistive technology.

If the IEE determines that your child is not autistic, but you obtain a medical diagnosis of Autism, you have firm standing to insist that your child be accomodated "based on need, not by label".

And that is where we are in our journey right now; we have an ED label with the school district, but multiple medical diagnoses from independent medical evaluations we did over the entire summer. We actually did this *twice*, with 2 practices. I have some testing from her previous teachers to submit to the 2nd one before I will receive their report. (Because I figured hey, maybe I'm paranoid, but they can't disregard two completely independent reports as easily as one - ie the "you shopped for a doctor to say what you wanted" angle).

And if there is one thing I have learned about paranoia, it is to pay attention to it. If there is any potential minefield that I can disarm BEFORE stepping into an IEP meeting, I am better prepared.

Accommodations continued - class goals

Have you ever really thought about the term "Behavior Intervention Plan"? I read an excellent web page today that went into great detail about a Plan works best when it's used by a Team, instead of simply being a list of expectations for one individual. The Team consists of the special education student, the Parent(s), the Class, the Teacher(s), and the Administrators.

So, why not set goals for your whole team instead of just your child? If everyone works as a Team, the Behavior that you want can be more easily attained; the Behavior that you don't want can be more easily shown alternatives; and everyone can learn from the experience, not just the Student.

With that in mind, we're going to ask for these goals to be implemented in Caitlyn's BIP. This is just my working copy, haha, so it still needs a lot of work! I want to be able to think of concrete measurable goals for the above for "probe taken 4 out of 5 times" and such - just like is expected of Caitlyn.

BIP goals for her class:

• To have staff and peers educated about Asperger's
• To show by example and discussion how to cope with frustration, anger, and dissappointment 
• To show acceptance of learning differences and abilities with praise or modification
• To involve Caitlyn in decision making regarding learning and social interactions.
• To offer tasks which focus on areas of Caitlyn's strengths and personal interests.
• To have planned opportunities for Caitlyn to demonstrate abilities.
• To value Caitlyn for her difference, not in spite of it.

Accommodations continued - Behavior and Assistive Technologies

We are going to get Caitlyn an iPad (if we get the proper consent from the school) to use instead of the AlphaSmart she has been provided because it has such a limited use and cannot be taken home. I read an excellent article here that detailed how wonderfully this device can be harnessed for special needs children. I'm really looking forward to it helping her not only in class, but at home!

17. Be referred to appropriate Special Education counselor or case manager if meltdown occurs to address cause, ownership of behavior, and alternative outcomes instead of punitively placed in administration office.
18. Be placed in adaptive Physical Education. Measurable goals should include mastery of monkey bars, jumping rope, walking a balance beam, running safely/addressing gait and movement issues, eye/hand coordination (catching and throwing different appropriate objects/balls), eye/foot coordination (ie kicking a ball), spacial recognition, observation, and reaction.
19. Be provided appropriate keyboarding class and instruction in order to appropriately use given assistive technologies such as the AlphaSmart.
20. Parent to provide iPad and appropriate applications/syncing ability with existing classroom technology/charging cord to replace AlphaSmart. Parents agree download ability will be locked with password protection unavailable to student and that no non-educational games or distractions will be on provided iPad. Wi-Fi connection may be used at teacher discretion and will be unable to be used without school’s WEP key. Sound may be used at teacher discretion with or without Parent-provided earbuds.
21. Teachers to be given instruction on appropriate uses of iPad for given class assignments. Parent will provide handout(s) on included software capabilities dependant on which applications Parent purchases/loads.
22. iPad applications will include but not be limited to a Visual Schedule; word processing program; calendar; behavior/incentive reward app; Social Stories; Visual Tutorials; e-textbooks if available/applicable; e-workbooks if available/applicable; flashcards and memorization improvement apps. Word correction/substitution of word processing program will be turned off if ability to do so is present.
23. iPad will be configured to a Google account (for Google documents) that can be accessed via any school computer by teacher, aide, or administrator to print out. Documents on Google update in realtime, save automatically every 5 minutes, can be used with multiple participants, and do not require the iPad to be physically attached to any school computer for downloading/printing off of assignment. Parent can view assignments at home in real time using said Google documents account.
24. Parent will provide handout(s) on how to use Google documents for teacher(s)/aide(s)/adminstrator(s) if needed.

What we're going to ask for at the upcoming IEP/ARD

This is really, really long, so I'm going to break it down into sections. This one is about her homework, which is currently taking us approximately 3 hours a day (due to particular subjects), 7 days a week. That's not workable with her needs at home and private therapy appointments, etc. Testing is also an issue; on her most recent test she scored a 0 - she didn't write down anything at all because she froze up completely. Memorization is a major issue; multiplication tables last year nearly killed us. Now that we're working on states and capitals, she can't do 10+ of them in a week. She had no problem the previous week with the smaller assignment of 4 states and capitals.

Desired Accommodations:

1. Monitoring during independent work
2. Read, simplify, clarify directions on assignments and tests, including standardized tests
3. Additional time given to retrieve details when answering questions verbally by 25%
4. Extended time to complete assignments and tests, including standardized tests up to 50%
5. Extended time of 50% for complex memorization assignments before testing OR
6. Breaking down memorization assignments into smaller testing sections if 70% or better mastery is not being attained on pre-test
7. Science and Social Studies assignments modified in length by 50%
8. Reduced homework assignments by 50%
9. Additional time for homework given of 1 day if needed. Parent will email communication to teacher of why time is necessary (therapy appointments that afternoon, meltdown, not understanding instructions for assignment given, not all materials present for assignment) that night for the teacher to access in the morning and will also note in Caitlyn’s planner why the assignment is not yet complete.
10. Check with Caitlyn prior to test taking to determine her anxiety level and prompt to utilize relaxation techniques.
11. Each homework assignment clearly written in the appropriate class square of Caitlyn’s planner by the aide or teacher of that class
12. Review all homework assignments are easily identified and written in Caitlyn’s planner before going home at end of day. Due date for each assignment should be clearly marked on corresponding square in planner to prompt Caitlyn to turn in assignment during that class time.
13. In each class, Caitlyn’s binder/bag/folder(s) to be checked, as applicable, before an assignment is declared “missing”.
14. Parent emailed that day if assignment is missing.
15. Review all homework materials are present and easily identifiable in Caitlyn’s binder, folder, or bookbag as applicable.
16. No penalty to grading of late assignments if 11-15 were not provided.

Welcome to Acronym Hell 101

You'll notice many, many acronyms throughout this blog. Some you may be familiar with, others you may never have heard of. If you are brand new to your journey to advocating for your child, these can seem overwhelming and complicate anything you try to look up or understand in communications from the school.

I'm going to provide a short list of the most commonly used acronyms. A cheat sheet, if you will! This list is by no means complete - but hopefully it will be enough for everyone to understand my blog. I'm also going to link to what they refer to, if applicable.

• FAPE - Free and Appropriate Public Education
• IDEA - Individuals with Disabilities Education Act
• LRE - Least Restrictive Environment 
• BIP - Behavior Intervention Plan
• 504 Plan - Covers learning problems, allergies, physical issues accomodations in a school, for individuals who do not meet the criteria for an IEP.
• IEP -  Individualized Education Plan. Accomodations for a child found to be Special Needs.
• RTI - Response To Intervention. Used by many schools districts now before referring for a special education evaluation.
• OT - Occupational Therapist
• PT - Physical Therapist
• LSSP - Licensed Specialist in School Psychology
• AT - Assistive Technology
• EBD/ED - Emotional Behavior Disorder/Emotional Disturbance
• AU - Autism
• FBA - Functional Behavioral Assessment
• IEE - Independent Educational Evaluation

How to create "The Binder"

The Binder may be the most important tool you can have for your child. It can be useful at IEP/ARD meetings; doctor's visits; therapist's visits; interviews with new potential professionals; filing for SSDI; contesting an SSDI denial; and more.

You'll need a good 3" binder that you're comfortable flipping through. I really like the ones with the zipper on the outside but these can be hard to find larger than a 2". I repurposed one I'd had custom made for couponing to become ours; I obtained it on an Etsy alchemy listing.  (It says 2", but we went with a 3").

The black strap on the left lets me carry my netbook with me (this was before I got my iPhone), the entire thing zips up, and it has a thick webbed carrying strap on the spine so that I can wear it like a messenger bag. The best part is that since it's a cover, if the binder ever breaks all I have to replace is the actual binder.

Now, you want to put EVERYTHING that involves your special needs child within this binder.

• "Letter to a Stranger"
• Medical reports
• Psychiatric reports
• Testing results of any kind
• Report Cards, Progress Reports, BIP percentiles reports
• Letters from Teachers and Mentors about observed behavior 
• Print outs of all emails from Teachers or other related professionals
• Print outs of all emails from any medical professionals 
• ARD/IEP reports, updates, consents
• Any disciplinary sheets (like detention forms)
• Early Childhood Intervention reports
• if necessary, Birth Records from the hospital (APGAR scoring, etc)
• List of developmental milestones reached and at what age
• any writing, artwork, or school assignments that stood out to you as an example of something your child is seriously struggling with or seemed "off"
• A log of scheduled ARD meetings to refer back to, with a VERY brief synopsis of what was discussed or agreed to
• A list of accomodations in place
• A list of accomodations desired but not yet obtained
• A log of scheduled therapies with dates (your insurance may only cover a certain # of visits per year, so this is a good idea to keep track)
• A log of any attendance to events that your school's Special Ed department holds (Family Counseling, Love and Logic parenting courses, Emotion Coaching courses, etc). 
• Birth certificate and Social Security Card*

 I highly recommend making more than one Binder. I was able to make a complete copy of all the above paperwork for less than $10 at Kinko's. I keep the originals at home and a set of copies go with me to ANY meetings.

I use index tab divider pockets instead of just tabbed solid sheets. Smaller pieces of paper fit neatly into these for the appropriate sections. Or, for example, I put the log of our ARD meetings in the pocket for the ARD section for quick reference. Ditto therapies, etc.

*You don't have to include the last one, but I'm constantly suprised at how many times I'm asked to provide this information. Sometimes it isn't actually required, just requested; other times, such as when dealing with SSDI, it's required. If you do carry these items with you, guard them with your life!

It can be hard to organize at first, but then it becomes routine. You carry it to therapy, you open it up, you write down today's date on the log and close it back up. You receive new ARD paperwork, you throw it into the 3hole puncher, you put it in the ARD section. Etc.

As it gets full and possibly hard to find the things you want to refer to (ARD paperwork is notorious for this!), use Post-it notes, flags, highlighters - anything that will help you make it easy to use. I like Post Its because not only can they stick off the page like a tab, but I can write on them to remember what I was going to ask about that particular thing.

Yes, my 10 year old shops at Victoria's Secret

SHHHHHHHHHH!

Because this is truly the best-kept secret out there for sensory-sensitive girls. How many of you out there deal with "The Underwear Meltdown" in the mornings? Do you have 3 drawers full of sixty billion pairs of undies in 6 different sizes and cuts, and your child can't find one pair that "feels right" that morning?

Yes, Victoria's Secret can end this battle... for a select range of sizes, of course. I'm talking about the Body by Victoria Bare Ultimate Hiphugger at 3/$30 or $11.50 each.

These are not sexualized underwear for children. What they *are*, is totally seamless (it's some sort of stitch-witch product used to close the edges) and magical no-unraveling trimmed openings that don't contain a binding of any type. Totally smooth, and not risque. These cover more than most brands we'd tried.

The sizing guidelines adjusted for a child would be as follows:
X-Small 8/10
Small 10/12
Medium 12/14
Large 14/16
X-Large 16/18+

They also have a similarly constructed Ipex Wireless Bra that starts at a 32A. I know a regular bra is torture for me (minimal sensory issues), so I can't imagine trying to put a regular bra on a sensory-sensitive child.

It may be difficult to have your Aspie grrl sized properly (issues with being touched, the large store, bright lights etc) but their return policy is good; ask about it. It may be your easiest bet to take several sizes home and then try them out and return what doesn't work. Sign up for the credit card if you can for the additional discounts; while these prices won't break the bank, unfortunately the stitchwitch construction used only lasts about 6 months before seperating at the "seams".

This made our mornings SO much easier, right next to seamless socks. Unfortunately the seamless socks I've found? Aren't totally seamless. In the winter at least, we can get away with the chenille type "warm fluffy" socks that appear everywhere for $1-$6 per pair (and proceed to shed everywhere for awhile, sigh).

This is my fourth baby.

I have 2 daughters and a son, but this is the baby that makes everything possible.

iPhone

This is my iPhone, but a refurb'd Touch will work just as well (sorry, I'm not familiar with a non-Mac product, like a Droid device, to recommend - if you are, please mention it in the comments.) You can get a refurb iPod Touch at the Apple store for $149. For the Touch, you can do anything you can with the phone (except calling) with a wi-fi connection. As most schools that have Wi-Fi will not give out the WEP key (sucks when you've saved links and realize you can't access them at an ARD) - make sure to save your documents by syncing your Awesome-Notes with google docs (where you have helpfully copy/pasted the relevant information).

I use the included Calendar (very functional!) to keep track of our therapy appointments, IEP and ARD meetings, Big Sister outings, doctor appointments, and medication refill reminders. The included note system is limited, however, and I prefer the app "Awesome Notes". I have my gmail synced to the phone so that I am ding'd every time I get an email (often from a teacher, doctor, or therapist); and I have my notes as above synced to google docs. It is amazing how much information you can have on you that fits in your pocket.
The Facebook app allows me to check for notifications to posts or questions I've made to various networking groups or people.

What do you use to keep yourself organized in the overwhelming scheduling of caring for a special needs child?

Important resources for advocating

Please don't miss the carousel links at the bottom of the page; they are handpicked books by me that I've found to be most helpful in dealing with schools or at home. You may be able to find them at your local library - mine even carries several in e-book format (which can be a lifesaver when downloaded on my iPhone so I can consult it during an IEP/ARD meeting!).

I'll be adding a list of helpful links to the blog this evening on the left hand sidebar. Please let me know if there is a great one I should add!

I don't want a keyring around her neck or arm

 I'm really grateful for these necklaces that Caitlyn can wear to school. The other kids don't notice as much. The breakaway clasp comes in handy during a meltdown, and makes them playground safe as well. I do hope they will continue to expand their range of colors and shapes (Guitar? Skull with a Hairbow? Peace Sign? - the sky is the limit, designers!). Unfortunately, they are rather expensive compared to the typical sensory jewelry and are only available from Canada. If you are a retailer reading this, please consider carrying these in your store!

These are available from Kid Companions at a cost of $17.49 each, plus shipping.

Caitlyn really likes hers; it was a gift from a very, very special lady on a cloth diapering board I was a member of. We are extremely grateful to her. I plan to purchase a pink one next; maybe for Christmas!

Why this blog exists

It's been a ten year journey to Caitlyn's diagnoses. During that time we've been through partial hospitalization, psychiatrists, pediatricians, school "Child Find" programs, Early Childhood Intervention, medication, and more tears and meltdowns than I can count.

In those years, I've learned a lot. Things I hope to reach out with and help others shorten their journey to getting help.

The very first and most important advice I want to share is this (it took me nine years to have someone on an internet message board give me this "key" to getting help!):

If you suspect a developmental problem with your child, please skip everything I listed above, because they CANNOT do it! You need a *medical* diagnosis for your child in order to get anything done. Schools can only "educationally diagnose" - and that label does NOT have to coincide with their medical disability.

The people you want to see ideally work as a team within a practice - a developmental pediatrician; a speech pathologist; and a child psychologist. If you can only locate a child psychologist or developmental pediatrician, that is ok; either one is qualified on their own to diagnose developmental disorders and autism.

ECI (Early Childhood Intervention, here in Texas; it may have a different name in your state) is a WONDERFUL resource. They will come to your home and help with therapies and services for your child 3 years of age or younger. However, unless a severe condition is immediately apparent, they are unlikely to proffer a diagnosis (and nor will the medical doctors you are referred to by them). But please do avail yourself of the services if they are needed; the earlier the intervention, the better.

Meeting with the new LSSP and Diagnostician

Not complete, but what I did today/found out at my meeting with the new LSSP and diagnostician.

LSSP - I LIKE her. She was intrigued with the use of the iPad and specific apps for special ed students (we spent a good 15 min comparing apps on our iphones); she had no issues at all going through the "autism supplement" for which things we felt DD1 needs in her accomodations; likewise she went through her BIP with me too to make it less of the piece of confusing crap that it was and make it into something far more constructive and intervening instead of "punishment after the fact". She also has been doing anything and everything she can to get dd1 into the FOCUS group even without the AU label (since it may take some time to come to agreement on that, but dd1 needs the group NOW).

Diagnostician - had specific concerns with the BIP also and contributed a lot of thought to that, specifically lowering the degree of mastery for dd1 at this time (previously it was 4 out of 5 probes or 80%, we all felt 60% would be better WITH the newly clarified stuff). Is going to look into a diversity class or something that can be presented to dd1's homeroom so the kids will not be as apt to tease her about her assistive tech. She also recommended that perhaps the OT could bring some extra bean bags that other children could compete/work something out with the teacher to make them seem like desirable things to the other kids. Also went through and took everything from the ARD minutes and is typing them into the little "accomodations" boxes to make sure her teachers have that information at hand.

Now, I hope I don't get her in trouble, and I expressed my fear of that - but I signed consent for them to contact the family counselor we used through the Spec Ed center last year. I related how shocked she had been that dd1 was there as an ED student and not AU, and that she might have personal observations or notes that could shed more light on things. Also, that she had coached us through some things that worked/didn't work that might be able to be passed on directly to dd1's teachers (specific de-escalation techniques, use of empathy as encouragement, breaking things into tiny chunks, etc).

This is one of the first times I've really felt the school personnel were listening to me. Unfortunately, the LSSP we dealt with last year still oversees the "Autism Team" at the school, so I will still have to deal with her through all this. Those are the meetings I will bring the advocate with or pay out of pocket for the child psychologist to attend with me.

We discussed the possibility of an aide, but they both said they didn't feel it was LRE to jump right to an aide (least restrictive environment) but pulled up her current accomodations and verified that she hasn't been receiving inclusion support, which *is* the next step. A special ed teacher would come into her classroom for her most difficult classes/meltdown apt times and be available for 1-on-1 support including bathroom/hygeine needs and lunch if necessary. I'm cool with that being the next step, if it doesn't help by next semester I can renew my request for an aide.

We also, for the first time, talked about futures planning (in this case, "what happens next year when she moves to middle school"). The ARD committee (and myself) will determine where her needs are at the end of the school year, and THEY will research which of the neighboring middle schools have the best support, available staffing, or other things (like "Circle of Friends" social skills groups etc). Then I will have the option of transferring her out of our zoned school, or even out of the district if we choose to have her in the best school to meet her needs. (YES!!!!!!!!!!! CAN I JUST SAY YES!!!!!!!!!!!!!!).

Write a letter to your children's teacher at the beginning of the school year

This really smoothed things for us (except with one teacher we're having ... issues with at the moment). I'm going to paste it below. I tried to introduce Caitlyn to them, go over her accomodations, provide some tips on having her in their classroom, etc. With that one exception, it worked beautifully! Feel free to snag it and insert your own particulars if you like. Or, feel free to suggest ways we might improve our Letter for middle school next year :)

To: Caitlyn’s teachers
Re: Caitlyn’s accommodations within the classroom

All of this is on record within her accommodations and the minutes from the last ARD meeting, but I thought it might be easiest to simply list them here along with any other information we (her parents) can share with you.

I like (and appreciate) daily or weekly communication depending on the class or concern with her teachers and believe this is the best way to help your class run as smoothly as possible while her accommodations are met. My email address is xxxxxxx@gmail.com and my cell phone # is xxx-xxx-xxxx. I can receive texts on that # as well if you wish to communicate in that manner.

These may change in the future depending upon the ARD accommodations agreed to as the school year progresses and as she gains study and organizational skills needing less daily support. This is the current situation:

• Organization - please record her daily homework and assignments in the school-provided planner within her binder. This ensures that at home, we are aware of what the assignments are and that they are completed by the due date. I request that if an assignment has not been recorded within the planner, that she not be penalized the -10pts per day for being late.
• Organization - her completed homework will be in her homework folder each morning. If it cannot be located within that folder, please check within the rest of the binder folders and her backpack. If the assignment is still missing, please provide an additional copy so that she can redo it that evening if we cannot locate the original.
• Organization - please do not allow her to check out more than 2 library books from the classroom or school library at a time.
• Organization - please let me know immediately if her “back up” gym shoes are missing from her classroom locker.
• Hygiene - she may need assistance or reminders to wash her hands after using the restroom. If you notice any bathroom “odors”, please send her quietly to the school nurse. I will provide additional hand sanitizer for the classroom if you require it to help her keep up with this and not spread germs to the other students.
• Hygiene - if her menses starts, please immediately send her to the school nurse, or allow her to remain in the restroom and contact me immediately. I will arrive at the school with any necessary supplies and personal clean-up assistance.
• Behavior - a praise to correction ratio of 1:5 is to be used at all times, and de-escalation procedures should be used. Please let me know how to best incorporate her accommodation necessity with your personal classroom behavior methods or charts.
• Behavior - please give her additional “personal space” and do not request or demand eye contact if she is beginning a meltdown. Either a cool down space should be provided within the classroom, or there should be one accessible to her that she can leave to locate within another approved area. You may request that she “cool down”, or she may herself request to “cool down”. This area is not to be used as a punishment or time out, but as a place for her to regain her composure and focus to return to the assignment or class discussion. Ms. Barentine successfully used this during the latter part of last year and may have suggestions or materials for you. The OT can also be consulted on setting up these area(s). A time limit of 5 to 10 minutes should be sufficient within the cool down area.
• Behavior - Her warning signs of escalation are clenching her fists, growling, attempting to hide either under her desk or with her head under her arms, passive resistance, very loud voicing, and flee attempts. If you can de-escalate during the early stages, it is possible to be back on track within moments. In the later stages, contacting Ms. XXXXXXXX or removing her from the classroom may be necessary.
• Assistive technology - using a computer or slantboard for writing assignments when reasonably possible. The OT should provide medical tubing for her writing implements that will be kept within her desk, as well as a chair cushion, banding around the front 2 legs of her chair, and/or other assistive needs that the OT deems needed at her desk or within the classroom. If you have a specific concern, please contact me and we may have something we will send from home to assist as well (such as jewelry that she can chew on, a weighted lap blanket or vest, or other sensory tools to keep her focused during class.)

Outside of these accommodations, I do have some requests. I have not yet had an ARD meeting or the opportunity to meet you, her new 5th grade teachers, so I do not yet know what will work within your individual classroom rules or physical desk set-ups.

If possible, please seat her nearest to your desk - she does need a lot of redirection and supervision. She has problems with interrupting or waiting her turn, so knowing that in advance may be helpful in assisting her to reach your classroom standards on doing so. She also does not understand concepts of personal space well and may get too close for your or other students’ comfort level with physical touch such as hugging, etc. so please be perfectly clear with her on what is allowed and what is not. Writing it down as well as the classroom rules and placing it in her folder for that class so she can refer to it may be extremely helpful.

She has many therapies during the school week after school hours and her homework time is limited, so if it is possible to break down larger assignments into smaller ones or allow some leeway on extra time allowances, we would appreciate it. There may rarely be days when such scheduling may not leave time for homework at all,  and if it is possible to give her a time extension of one day without academic grade penalty that would also be appreciated. I will communicate directly with you if there is a schedule conflict that week in advance, so it may be possible for her to complete the work ahead of that day and it is returned “on time”.

The only other circumstance we may ask for extra time without penalty is if she is unable to complete an assignment due to not understanding it and neither my husband nor I can figure it out to assist her - I expect that to be a VERY RARE circumstance but it did come up a couple of times throughout the course of last year when she had a worksheet that did not have printed instructions (the color pinwheels are a good example - I still do not understand these).

In an attempt to clarify the above, the first two deal directly with her disability so I hope she is not penalized academically for that; the third is simply something that we may be able to prevent with good communication and written assignment instructions.

My goal, again, is to assist in trying to keep this as stress-less as possible for us both with a minimum of impact on your classroom. I greatly appreciate your time and understand how limited it is. I also understand that my child is only one of many you are responsible for within the classroom. Last year’s experience showed me that communication is the key in keeping things running smoothly, and I look forward to working with you this year.

Sincerely,
AspieGrrl's mom

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.