My name is Caitlyn. I am 10 years old. I have Asperger's, (Autism) OCD, ADHD, and generalized anxiety disorder.

Wednesday, October 20, 2010

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!

Tuesday, October 19, 2010

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.

Monday, October 18, 2010

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.

Friday, October 8, 2010

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).

Wednesday, October 6, 2010

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!

Monday, October 4, 2010

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?