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

Thursday, November 10, 2011

Parent concerns: Accomodations


November 7, 2011

ARD/IEP Meeting for Caitlyn XXXXXX, grade 6A
XXXXXXX School of XXXXXXXXXXx

Parent Concerns:

Accommodations

Parents are concerned that accomodations are not being consistently implemented by all instructors in all classrooms. Caitlyn is entitled to copies of teacher notes for classes to supplement her own, not based on "teacher discretion", for ALL classes checked on page 17 of 26 on her accomodations page in her IEP. She is only receiving consistent handouts from her Math teacher, and her Turkish teacher. Other subjects there are sometimes items sent home, but other things that should be provided are not being provided (chunked assignment schedules with due dates listed clearly, vocabulary lists, notes for class, etc).

Since Caitlyn receives AT accomodations involving a laptop and a flash drive in Social Studies and ELA, there are also times when this information may be on the flash drive but it is in the posession of someone other than Caitlyn when she comes home or left in her locker, so we cannot access any documents on it.

In the area of "Reducing Work without Reducing Skills" there are times when this should have been implemented - again this is not noted as "teacher discretion" - such as the Poetry Project which could have been reduced to 20 poems from 30 without negating the purpose or scope of the assignment. (This is only used as an example as it is a recent project). Assigning math problems that are even number instead of the entire worksheet would be another example. For most assignments, the only ones that need "Reducing Work" are those requiring lengthy writing portions based on our observations. While we do not feel that right now this is impacting Caitlyn greatly, it is affecting her academic grade and stress level. It should be immediately implemented and followed so that it does not BECOME a problem.

In the area of "Chunk Lengthy Assignments Into Smaller Units", this is also not being done. XXXXXXXXs own schedule for some things such as the provided schedule for the Science Fair is acceptable for that project; it chunks the project down into areas; it provides clear due dates; it is easily accessible to the student. However, areas *within* that schedule still need clear chunking. An example would be to assign Caitlyn to do 1 thing on Monday night and 1 thing on Tuesday night, instead of 2 seperate areas that are both due on Wednesday. This allows us to better monitor her progress at home and keep her up to date within the class so that she does not fall behind or require extra time to complete an assignment due to confusion on her part. Another recent example would be the Drama Project from ELA for which we did not receive a sheet with the chunking, description of exact assignment, and due date for each section of the project. These are required and noted in her IEP.

In the area of "Access to Technology for Writing Assignments", this is also NOT listed as "based on observation" or "by teacher discretion". Caitlyn should have had access to the AT since the first day of school for all subjects noted in her IEP which are checked, which are: ELA; Reading; Social Studies; Science; Electives. The laptop should, based on her IEP, be available in all classrooms where she MIGHT need access to it at any given time. She should not be required to fetch it from another classroom or to lose instructional time to retrieve it.

In the area of "Organizational Help w/binder(s) including notes/homework" we request to add the word "agenda" or "planner" to this area. She is required to receive this during all of her classes, every day. We believe that this would require excessive teacher attention to do so by her General Education teacher and that the school and Caitlyn would be better served by having this done by her aide at the beginning and end of each class listed in the IEP (All subjects including electives, except Gym).

Request for Implementation as written of the IEP accomodations above, commencing on today's date, consistently and with accountability.

Request addition of the word "agenda" or "planner" to the subject area "Organizational Help". This is page 17 of 26 in her IEP.

Written Notice of Refusal


Written Notice of a Refused or Tabled Action

Student Name: ________________________________________      Birth date: _____________

Parent(s): ____________________________________________       Date: _________________


IDEA (20 U.S.C. 1415(c)) requires "an explanation of why the agency proposes or refuses to take the action and a description of each evaluation procedure, assessment, record or report the agency used as a basis for the proposed or refused action;"

The Texas Notice of Procedural Safeguards states that "A prior written notice must describe what the school is proposing to do or refusing to do. It must explain why the action is proposed or refused. It must describe other options that were considered by the ARD committee and why those options were rejected. It must describe each evaluation procedure, assessment, record, or report the school used as a basis for what it proposes or refuses, and any other factors relevant to what is proposed or refused."

Purpose of this notice:
___ An action being refused by the LEA
___ An action being tabled by the LEA             Date of next consideration: __________________

Notice:
1. A description of the action refused [or tabled] by the local education agency.




2. An explanation of why the local education agency refuses to take the action [or tables it].




3. A description of any other options the ARD team considered and the reasons for the rejection of those options.




4. A description of each evaluation procedure, assessment, record, or report the local education agency used as a basis for the refused [or tabled] action.




5. A description of any other factors that is relevant to the local education agency's refusal.




___________________________________       _______________________________________
                    (Signature)                                                    (LEA Position)

Parent Agenda for IEP Meeting


November 7, 2011

ARD/IEP Meeting for Caitlyn XXXX, grade 6A
XXXXX School of XXXXXXXXX

Parent Concerns Agenda

Procedural Issues:
  1. Did not receive Teacher Input For ARD Meeting Form A from each instructor prior to ARD
  2. Did not receive printed Occupational Therapist report for first or second six weeks grading period (20 minute consult per 6 weeks) 5 business days before ARD/IEP meeting
  3. Original Occupational Consult performed on 9/12 did not include sensory assessment of the Assistive Technology supplement in the area of sensory items
  4. Did not receive proposed new XXXXXXXX written IEP 5 business days before ARD/IEP meeting

Parent Concerns:


·                     Define what a reasonable time period for getting response from Special Education is
·                     Define exactly who our point of contact is, singular – Mr H, Ms G, or Ms M?
·                     Inclusion/Aide Time
·                     Access to Assistive Technology and Training for Assistive Technology
·                     Teacher provided handouts and notes
·                     Parent Training and Support
·                     Staff to Student Ratio (independence, transitions)/ Daily Schedules Autism Supp
·                     Educator Support and Training
·                     Accomodations (page 17 of IEP)
·                     OT needs to assess AT needs for sensory items and not just BIP needs for behavior (page 18)
·                     Supplemental aids and services (adding Self Help and Organizational under Student Needs - rationale: would require excessive teacher attention without aide)

Some of our IEP documentation

Hi! It's been several months since I've updated - ouch!

Both Caitlyn and Rowan now attend a charter school here in Texas. We've had issues with the special education department in implementing their carryover IEP's from the previous school, and this past Monday we had our first ARD meeting with the new school.

I was asked by a few people on a private board I am on, to share the documents that we prepared ourselves with for the meeting. I'm going to post those one at a time with seperate posts and titles to make them easier to locate for you if you wish to use them.

Please note, these work best with the binder system. This is what my binder for Caitlyn contains, as an example (paperless? Never. LOL)

  1. Agenda for the IEP meeting with our parent concerns bullet pointed
  2. A list of Procedural errors that have occurred (I hope to never need this, but it is groundwork for a due process hearing. For example, we were not given 5 days written notice of the ARD; we were not provided with any reports previous to the ARD; we were not given a copy of their draft IEP until I *asked for one at the ARD* when they started referring to it. They didn't even hand us a copy when we got there!)
  3. Our list of requests to amend the Conduct Code for Caitlyn that she has difficulty following due directly to her disability. We disagreed with the school that she needed a BIP (Behavior Intervention Plan) and her teachers and aide agreed she does not need one - the things we're asking for her to be excused from should be addressed within her accomodations. Ex: Humming can get you detention points. She may hum if people are being too loud to create white noise in defense, or if she doesn't have an oral motor stim to occupy her mouth with. This is not an intentional misbehavior to be corrected, but a manifestation of her disability that can be corrected by teacher prompting and the OT provisions for her oral motor stims etc within each classroom.
  4. Printed copies of each individual request for a change to her IEP (so if we're asking for Assistive Technology training, that has its own sheet)
  5. A "Written Notice of Refusal" for the school to fill out for any actions that they table or deny. This is required by law under IDEA and a powerful tool for parents. If they "blow off" a suggestion that you make or a request, whip one out because they have "effectively" tabled or denied it. They MUST tell you why they are denying it, what alternatives have been considered, and if there is a date for re-consideration. I keep about 20 copies on hand just in case.
  6. Printouts of all emails relating to issues that should be covered under her IEP
  7. Printouts of all other emails that involve Caitlyn and the school in any way (such as communicating with a teacher about an assignment, or a report of any misbehavior)
  8. Blank pages to take notes on at the meeting
  9. After we're home and refer to the notes and which items were granted and which were not, I type up a summary of my OWN notes regarding the meeting covering all of the above, and have them attached to the IEP as a "Parent Supplement - Notes". This is a way to make sure that something that was discussed during the meeting but not typed into the school's notes makes its way into the official IEP records, since a common argument for not complying with something you understood would be done is "We don't show that in her IEP. No, not even in the notes".
Be proactive and take control of the meeting; do not let it take control of you!

Saturday, April 30, 2011

April update

We raised $160 via Wish Upon a Hero :) This money was used to pay for Rowan's orthotics (LFO) and for new shoes to fit over them. The remaining $16ish went towards her $60 hand splint. Insurance picked up the LFO's minus our copays once we had the correct CPT (thank you anonymous emailer of information!) Very, very grateful to everyone who donated, thank you for making this possible! One more week till the LFO's are here and I will post pics once they are.

Caitlyn continues to do well at school. We finally had a slight reduction in busy work from the one teacher we have difficulties with. She made A honor roll for this 6 weeks again. Congratulations, honey, I knew you could do it!

Caitlyn and her older brother got into a local Science Academy for middle school. We're very excited about this for next year. It's possible Rowan will get in as well, but there were 3 people ahead of us on the waistlist last week and I may not know for awhile. They are very excited about the possibilities at this school including a robotics team and programming. I'm excited about possibly being able to take them all to one school and pick them up at one school again!

Rowan's ARD is scheduled for May 16th. I'll be meeting with the autism team beforehand so will know what to expect (and will update you all as to their findings).

We have our last in home visit scheduled next week. I have not found the person to be very helpful, unfortunately. I had such high hopes about these visits. Perhaps next year will be better.

Summer's coming... EEK!

Thursday, March 24, 2011

March update

I'm losing track of days at times, too much going on. I'm not sure how I'm getting anything done at all but somehow it gets done.

Mostly.

Good news over the last month:
We spent Spring Break at home with the kids. No therapies, no karate, just family time. We went to Going Bonkers, ate out. We hoped to do more than that but Groupon had an error on our movie tickets the day we could go, and other places were crowded to the max. We'll try to go to the Zoo and other places on the weekend as money allows or as there are group-buying-site deals. They said they had a good week and that is what matters most to us.

Caitlyn's grades are good, and she's made some friends both in the neighborhood and at school. I'm grateful for that. She spent last year without any real friends and it was incredibly hard on her. I'm also grateful for the continued involvement of her Big Sister Rachel in being there for her and being her mentor (and granting me those moments of respite). She got permission from her teachers to apply for pre-AP classes next year in middle school. I'm worried about the pressure and the amount of work required, but I think she should have the chance to see if she can cope with the workload. She's so brilliant!

She has been on a trial of Concerta for 3 weeks and we go tomorrow for a follow-up with the dev ped about it. Her focus has been a little better, but after lunchtime she seems to "crash" into extreme irritability. We'll be asking about that. I don't know anything about changing dosages with this medication or balancing it out with her other medicine (Celexa). I have not seen the improvements we had hoped to see by 3 weeks. If you can tell me about your experiences with Concerta, please do?

Her greatest accomplishment was a "mock Congressional hearing" held at the school one evening two weeks ago. Her speech therapist helped her practice and we assisted at home with being her audience and pretend "Judges". She received excellent marks, and cracked up the volunteer judges at one point when asked what she would do to convince her older brother to vote - "I'd kick his butt". We're very proud of her, she had to overcome a lot of obstacles to participate including a timed, memorized speech she wrote herself; not fidgeting during recital; using hand positions to denote when she wished to speak.. and stage fright of epic proportions. I'm so proud that she was brave enough to do it and that she succeeded beyond my wildest dreams.

Rowan continues to regress in many areas, but we had a breakthrough with the OT today. We were able to get 5 minutes of sustained eye contact while she was on the "egg swing" w/a lap pad. She was able to do some fine motor skills work (tracing, drawing, coloring) between sensory activities - she produced more work product today in one OT session than she has been in a week at school. We also had a photo shoot today with a great photographer who got some excellent shots. I will share them after viewing/purchase next week. She really enjoys hamming it up for the camera!

Our oldest son Ashton received his gold belt in karate, and Caitlyn has received her third gold stripe and will belt test next week. Please wish her luck, she is very much looking forward to this and has worked hard for it.

The not so good news: 

We had OT and PT private evals on the girls with mixed results. The greatest difficulty is their feet; Caitlyn's toe walking has led to collapsed arches and over pronation. While orthotics may be necessary ultimately, we are currently exploring other options such as the Skechers extended-wear Shape-Ups since she wears a women's size 8. In the week since we purchased these her pronation is greatly improved while wearing them and her gait has some correction. She appears to be less "clumsy" with her balance as well. We also purchased some arch-support Asics for gym class and other activities where the Shape-Ups might be a little risky.

Rowan's evaluation was much worse. She has zero degrees of.. please pardon me if I don't get the terms correct - heel drop ability/foot towards knee extension. She is an extreme toe walker, nearly en pointe when barefoot. Due to her small shoe sizing and wide foot width, "articulated AFO's" orthotics are being heavily suggested by the PT. Her OT report came back with a suggestion for a hand splint/brace as well to assist in her fine motor skills. The total cost we are looking at is $1200. We are hopeful that donations through Once Upon a Hero will be able to assist us with this. You can view our Wish here: http://www.wishuponahero.com/wishes/?id=880105#comments - and please, please share it on social networking sites. The greater visibility we get... if we can get 1000 people to donate $1 we will be extremely close to our goal.

We DO have some savings, but are working on setting up a PT/OT area for the girls in what was the upstairs playroom. Today I was given a list of what the OT felt were the most beneficial swings and equipment that she is responding to. I found a reasonably priced maker of weighted blankets and pads on Etsy that I'm following through on. It will likely take all of our savings to set up this area, hence our request for donations for the orthotics.

We have good/meh insurance. It's good that they cover OT, PT and speech - but our limits are not great. We have a self-funded union plan with a hard limit of 30 PT visits per calendar year, and 30 visits combined of OT/speech per year. In order to give the girls the best help, we need to be prepared to "go it alone" for a few months at the end of the year while waiting for calendar rollover, and also being able to reproduce their therapy at home to do it more than once per week will be highly beneficial. I'm watching craigslist and such - if you know of a discount supply for pediatric OT/PT items, please let me know as wrll.

Our copays are running about $500 per month right now on meds and therapy. I'm very grateful that we are able to cover this and have made cuts/savings in other areas. We are receiving partial scholarship for Caitlyn's special needs accomodated karate classes, which helps.

So a mix of good and not so good. I feel confident that once we get over the initial investment hurdles for the equipment and installation, and are able to go to once-per-two weeks on the therapy (after I'm trained in their exercises/spotting) that life will again approach balance. It's only hard right now, and we WILL get through this.

Rowan's evaluation through the school district continues. I believe we will go to ARD sometime in late April with the results. Wish us luck and bless you all.

Saturday, February 26, 2011

It's sad when I'm struggling to update just monthly now.

Rowan (dd2) was diagnosed with Asperger's, dyslexia, ADHD, coordination issues, and generalized anxiety disorder.

*le sigh*

We're coping. That is the best I can say right now. She went to her first OT visit/eval and will be having both OT and PT on Wednesdays. They are recommending orthotics for her toe-walking, but right at the moment I don't want to do that. I'm not making the decision to say "no", I'm just not up for making that decision yet.

In other news, I can't get our insurance to verify if they cover ABA. They keep telling me they don't know what that is. I also cannot find an ABA provider in our major metro area (Dallas) that takes our insurance. Easter Seals doesn't, and we are not within their driving distance for in-home, either. I keep hitting brick walls.

I attended the first informed consent meeting with the school district to start her evals with them so we have an IEP in place for kindergarten in the fall when all is said and done.

We've started a trial of Tenex to help her sleep and with her adhd. It sort of works, the side effects are not TOO bad, but I'm thinking of stopping and trying the Abilify instead before deciding what to keep her on.

For news regarding Caitlyn, she's been doing great. There are still meltdowns and food stealing, but it's not as bad as in the past or even close. She is making some friends both at school and in the neighborhood. And for this six weeks, she made "A" honor roll - with a score of 102 in Social Studies <3 Very very proud of her and making arrangements for her reward for that achievement.

I'll try to post more often/work on moving the blog over or something. Things are just very busy and while I know you all love my updates I don't see them as being much more frequent until school is out for summer.

Thank you to everyone walking this journey with us. And peace to those walking their own.