First week back at school

I really don't understand what the school is expecting of Caitlyn, or of me. I feel like even though she may have the correct "label", no one there still understands that she is a child with autism who presents particular difficulty with things they take for granted with NT kids.

After three years of evaluations where they minimized her trouble with transitions, I received an email griping at me about the difficulty she has coming back to school after a break. Yes, people, this is what I have been telling you. She might be able to handle minor transitions relatively easily - going from a reading assignment to group work - but larger transitions for her are very hard when they involve her *entire routine*.

I'm also very upset - and angry - that they continue to use language like her being "belligerent" or not doing something "because she doesn't want to."

Very rarely is that ever the reason behind her reaction of shutting down. Even this morning, which resulted in a horrible meltdown making her late for school again (wow, I'm sure truancy court will be fun) it wasn't due to her not wanting to go to school. There was a paper I'd forgotten to sign, and she escalated super quickly into gibberish that I couldn't understand. The reason? MeanTeacher keeps threatening her with the loss of recess if she doesn't bring things back. She completely shut down out of terror for losing reccess - for something that was not HER fault! I forgot to sign the paper, that is on me! She should not be punished for that.

In a very bad mood this morning. I keep hoping there is a light at the end of the tunnel but it's escaping me right now.

On the one hand I cannot wait for her to be done with the staff at this elementary school in a few months; on the other hand I'm worried about her transition to middle school and the same or different problems we may encounter there.

I wish for a money tree to send her to a school that can really help her succeed, but everything I've found only offers partial scholarships that would still not let us afford the adjusted tuition.

Happy New Year

Haven't had anything to report since the holidays began with a madness all their own. I hope everyone had a great holiday and that this year brings progress for us and for you!

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.