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!

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!

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.

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.

Possible new blog adress/name

We may be moving to a more inclusive blog title due to some... not completely unexpected, but wrenching news for our family.

Our youngest, Rowan, has just been diagnosed on the spectrum as well. Things moved very quickly as we knew straight away where to go. Following a mutually-requested teacher conference where we learned of the teachers' concerns (our concerns had been about her loss of skills since last year and concern about the curriculum), we made an appointment with the speech path to have her speech evaluated. She ended up testing as having a mild speech issue, but the path referred us to the developmental pediatrician in the practice from observing her in combination with the teachers' concerns that I related.

We have only been told this week that she is "on the spectrum". We still have a meeting and more paperwork to do with the child psychologist, and the teachers' Conners and other forms had yet to be done scaling.

I had hoped that some things I was seeing were simply her copying Caitlyn, but she has presented several things that Caitlyn does not at all, and is not presenting others that Caitlyn is (such as the meltdowns). She is now at the exact same age, however, that Caitlyn's issues became truly apparent in school.

We have been recommended to have our oldest, Ashton, evaluated as well and to have genetic testing done (in hopes that perhaps in the future the information gleaned may be helpful to our own family or someone else's).

Our household is going through a .. paradigm shift right now. My husband and I decided to hire out some of the housework to take some of the pressure off our schedules and stress levels, in hopes of increasing our family time (or at least making things not quite as rushed.)

We are also renovating/redesigning much of the house to accomodate more of what will work better for all the children, including the PECS schedule and similar things. We are also continuing to declutter and reorganize the entire house so that we are not trying to deal with so much stuff in the middle of so much "stuff".

If you or anyone you know would be willing to design a new blog template, please let me know.

Very positive news, Caitlyn made A/B honor roll again this 6 weeks. We are very proud of her!

PECS is working wonderfully!

We've done a trial for two mornings in a row using our morning visual schedules. Everyone has one, including dear husband and I (this also lets the kids know where to find us at a given time).

In two days we have gone from constant chaos in the mornings and lateness to a mom's dream!

We're up at 6am (according to the schedule) but haven't acclimated yet and have accidentally been sleeping till 6:30. The PECS are still working though and everyone has been on time or early to work/school.

When we all leave, the following chores are already one:

1. Everyone has eaten a hot breakfast and the dishes are washing in the dishwasher
2. Table and counters have been cleaned off
3. One load of laundry has been washed and is in the dryer
4. ALL beds are made
5. ALL dirty clothes are downstairs
6. Everyone has their hair brushed and teeth brushed
7. DS and I have had our showers (the girls and DH wash hair at night)

There has yet to be any major drama or meltdowns. Everyone knows what is expected of them. I'm really not having the online time in the mornings that I'd gotten used to, but I can either get up earlier to enjoy that or really, I'm doing fine without it.

I get to come home to a house that is fairly clean and not too cluttered, which has me less stressed and means I will be able to get to the deeper-cleaning things that were taking up a lot of our evening and weekend time before people get home from work/school. The kids do have some afternoon chores, but very few. (Summer will bring more in terms of yard work, but there won't be 8 hours gone to school to balance that.)

I had them all laminated at the teacher's supply today and told them to expect me back frequently :) At 50 cents per foot heat laminated (and that's 36" WIDE!) it's a bargain.