Sunday, February 6, 2011

You live for the fight when that's all that you've got*


I'm feeling a little bit beaten down. 

Friday we had our preliminary IEP meeting.  For those of you lucky enough not to know what that means, here's a quick and dirty summary.  Maya is a special ed student----she will be entering preschool in Sept and needs and "individualized education plan".  When a 3 year old has an IEP, it mainly specifies what type of classroom she will be in (the ratio of kids to adults), what therapies she will get, and other special things she might need (like an aide).

Due to the dire state of Maya's evaluations, I allowed myself to think "This hopefully won't be too bad.  Obviously, she needs oodles of services.  Maybe there won't even be an argument."   I read the reports, highlighted things, had letters from our pediatrician and private feeding therapist, supporting the fact that we need a lot of stuff (just in case), and put together an awesome binder.   I was totally prepared.  I even blew out my hair, so as to look professional and put together.


My faux hawk mullety 'do

Ok, my hair wasn't helping.  But with really strong gel, I tamed it into submission.

I'm not going to give a blow-by-blow recap of the battle that was the preliminary meeting, because I  don't have the emotional stamina.  But here's the summary.

Pro's:  Maya will definitely have a seat in a center based pre-school (it's still up to me to find her a spot in a good school, but the city will approve that spot once I find it).  She will definitely have a one-on-one aide (paraprofessional).  She will definitely get the maximum number of therapy units that are provided by whichever school we go to (each school has their own maximum---for example, one school only provides a max of 2-30 minute PT sessions per week).

Con's:  In addition to the therapy in school, I want her to have therapy outside of school.  The guy in charge of our meeting says no.  He says it's his job to provide us with an appropriate school setting and nothing more.  I say that I want her current level of therapies to be maintained, and that since the school can only provide a certain number of sessions, I want the remainder done after school.  He acts like I'm asking for the moon, I say that this is neither an uncommon nor unprecedented request.  We stare at each other.

The bottom line:  I now have a lot of work to do before the next meeting in April (that's when we'll actually sign the IEP and agree on the preschool and the therapies):

-I'm touring another preschool this Thursday. 
-After that tour, I need to figure out which (of 2 schools) I like better, and schedule a playdate for Maya to go to that school and be screened.  Hopefully we get a school that says that she's a good fit and they will provide her with a spot.
-I need to gather prescriptions, letters from doctors (as many as possible), letters from all of our therapists, progress reports from all of the therapists, and whatever other evidence I can think of to argue for the inclusion of after school therapy in her IEP.
-I probably need to hire an advocate to attend the April IEP meeting with me. (Strength in numbers and all that jazz)

Also, I'm swinging into high gear with putting together our dreaded insurance appeal. 

It's very difficult to feel powerless

I know what I'm doing.  My binders are no joke.  The way that I am able to write rationales, organize paperwork, compile data . . . I'm pretty good at it, I think. 

It's rip-your-heart-out-painful and I'm-going-to-go-postal-on-your-azz-frustrating to put together work that's so good you think "How could any rational person argue with this?"  . . .  and just have it met by a pencil pusher who says "Um, no.  End of story.  But feel free to file an appeal if you disagree." (Smug smile and a shrug)


In a teary conversation with Dave last night I realized that I need to find a way to compartmentalize this stuff more---to not take it personally when the insurance people send me to another dead end, or this guy says "I'm not going to give you any of that, but we can talk about it again at the meeting in April if you want." 

I have to carve out some sort of zen, centered life, with satisfying and pleasant things, so that insurance appeals, IEP fights, etc (there may be a few other similar battles on the horizon) just become projects-I'm-working-on, and not things that keep me from getting a good night's sleep, and make me cry frustrated tears.


On a lighter note, our OT went to a taping workshop on Monday and now likes to tape Maya up.   Hee hee.

PS-Grab the "My plane landed at Amsterdam International" button if you have a blog or website.  Putting it up does three things: 1. It makes you my new bff, 2. It breaks the ice in sharing some of your experience with your friends/family 3. It helps spread the message to others who may be comforted by knowing their not alone :)


GB's Mom said...

Generally, if a school administrator tells me I am welcome to file I smile my best smile and tell them that,s my plan. It is helpful to have the appeal paper work filled out ahead of time, preferely with a copy for the school district. Filing appeals is generally a lot more expensive for the school district and once you have followed through with due, proccess, the district takes you and what you want much more seriously!

Anonymous said...

As a special ed teacher I say if you can get an advocate now get one to go to the next meeting with you. It is amazing what a district will look at differently with an advocate (or a special ed lawyer) sitting by a parent. My school district is pretty good, and I don't personally have any students this year that require outside therapy, but I know how quickly things can change in a parent/student's true best interest when an advocate or lawyer is also attending the meeting. I also recommend going in with any points from the parents rights IDEA book. If you haven't yet you can get lots of that from I know that parents who are knowledgeable get a lot more results quickly! Good luck.

Foxxy One said...

Go get them tiger! I know exactly how you feel. I'm very fortunate to live in an area that (at least up to second grade I've been told) has very amazing services for special education. It's after 2nd grade that I'll need an advocate.

A friend of mine does the binder thing too (and we are now doing it). Every new school year she makes an "all about me" book for her daughter's teachers, aids and therapists. It has her photo on the front and lists all her strengths and all her challenges. Likes, dislikes, etc. The teachers love it and it's a great tool :)

Angela said...

I'm not as far into Holland as you, but I can relate to your frustration. Also, I grabbed your button, and created a page for it. Yay!

Cheryl (in Buffalo) said...

Sending you hugs...I am also preparing for a significant fight as my daughter transitions from a full day integrated preschool program to kindergarten........and am also hoping to get an advocate to help me. I am well aware that districts do not want to pay for fair hearings or anything else beyond the regular level of meetings, and using those "rights" can be very helpful to get you what you want!! (and, of coursse, what your child NEEDS!!)

Post Tenebras Lux said...

Maddening!! The advocate sounds like a really, really good idea. Go! Fight! Win!

How is the taping working? We tried it and I was really excited about it, but E had *horrible* skin break-down the second time we used it and we had to quit. Sigh. I would love to hear whether you feel it's useful.

Cynda Western Felini said...

I grabbed the new button! I love it! Thanks! It has helped with conversations and I've even referred a friend with a newly born DS baby to read Amsterdam International.

Dana said...

Thanks to all of you button grabbers :) I like to know that AI is still trickling around and reaching new people who might find validation from it.

PTL-we can't keep the tape on her for too long---after her OT sessions she waits until I'm not paying attention and then starts pulling it off. But when it's on, her mouth stays much more closed and she has less drooling, for sure.