Friday, May 14, 2010

E's Kindergarten Plan: IEP triumphs over 504!

We had Elena’s IEP meeting this week. I was very, very nervous; I know a lot of parents of special needs kids really have a hard time with public schools when it comes to education, safety, and inclusion of their children. Our experience has been extremely positive, since the beginning.

Still, every time I go into a meeting, I can’t help feeling that we’ll be dropped, just when we need the help more than ever.

At the heart of the matter is the fact that Elena is a smart girl who moves poorly. The public school system will provide services (PT, etc) provided they are required for Elena to succeed academically. I had been warned by our school PT that Elena would probably not qualify for services in kindergarten. She wasn’t being mean—she was trying to prepare me for the inevitable future. My worry was safety—Elena goes to the school nurse A LOT for falls; kindergarten is the first time the kids really integrate with the student body, and travel all over the school for classes on a daily basis. Both of these would result in greater fatigue, more opportunity for injury related to navigating through a crowd of people. Now, I understand that a little PT during the week isn’t going to magically evaporate those worries, or make those gross motor hazards vanish. Neither will an IEP. But with an IEP, the school is legally obligated to accommodate Elena, to keep progress reports, to keep me informed, and to problem-solve related to keeping her best integrated with her peers. I am lucky that I have a great team of educators who are genuinely interested in doing these things for Elena without a document obliging them to do so. But the threat of changing Elena from an IEP to a 504 scared the crap out of me—a 504 is also a legal inclusion statement, but there is no paper trail, no progress report, and it varies from school to school—so in short terms, everyone could be compliant with the 504 and basically do nothing for Elena, and I would have very little recourse. Teachers these days have TONS of paperwork, for typically developing students; kids with IEPs have lots, lots more, and I understand that extra work is not trivial.

Prior to E’s IEP meeting I consulted a lawyer. Basically, I wanted to prepare myself if I had any legal standing for making them keep E’s IEP (even if she didn’t qualify for services). I didn’t really get that far…I know that everyone (including E’s educators and myself) have to agree to the IEP plan, including termination. I decided I was not going to sign if that was the decision; at least, not until we got to observe how Elena was adapting to the pace of kindergarten. I cannot demand that Elena receive PT in school, that is up to her educators.

I didn’t have to think that far ahead. (whew!)

Our meeting was two hours long. We discussed Elena’s progress, and how she is doing presently with her peers. I was very, very pleased. The school PT was very impressed with Elena’s progress, and believes most of it was due to her SDR surgery last February. Elena can use a standard bathroom, with the rest of the girls in her class, unassisted (unless she is wearing a dress or skirt). She navigates the classroom independently, without assistive devices. She can get up from the floor on her own, without using a handhold (although she often does). She is independent during lunch, provided she sits with support under her feet (90-90-90 seating arrangement). She brushes her own teeth after lunch. She can carry some objects around the classroom. She is academically on target with her peers, and is a bright, social, engaging child, who wants to do things on her own but is willing to ask for assistance (normally after trying it herself).

Elena’s disability affects her schooling because her walking speed is significantly slower than her peers, and assistance is needed to ensure she does not miss instructional time. She requires assistance at all class changes, as well as boarding bus transportation (she takes the Special Ed Bus). An aide takes a stroller to/from recess; Elena typically uses her loftstrands to recess, and rides a stroller back to the classroom after recess ends. The playground is hilly, and she requires assistance to navigate it. On field trips, she requires wheeled transportation (stroller). She requires extra time to transition to any classroom or activity outside the main classroom.

I asked what the transitions were on a typical kindergarten day. Not counting bus arrival/departure, there are four long daily transitions: recess, gym, art/music, and the cafeteria. These activities are ALL over the school, including one in an outside trailer. My heart sank. She would be EXHAUSTED if she were not given extra time/assistance—and NO ONE wants to give her a wheelchair. It might be convenient, but in Elena’s case, that would literally and figuratively cripple her movement pattern progress.

The staff on a typical day consists of the Kindergarten teacher and one part-time aide. That’s barely enough to keep a typical class together, forget one with a motor impairment. I am still petrified of the cafeteria…E would have to navigate a giant room, with all sizes of kids, not to mention tripping over chairs, backpacks, purses…she’s never carried a lunch tray, or worn a backpack. She’s easy to trip if someone kicks her crutches, or bumps her with her crutches on—falls with loftstrands are messy, even without all the peripheral dangers in a crowded lunchroom.

The IEP team (myself included) thought up a plan and put it in writing. It’s a legal document. The document can be rejected and revised; this hasn’t happened in this county for 25 years. I’m going to start referring to my IEP team as The Dream Team!

Here’s the bottom line:

Elena needs a full-time aide (this means they will have to hire/dedicate a person just for E). She will require extra time and assistance between all school transitions. She is expected to use the bathroom independently. She will have a stroller, if she wants it, at least in the beginning of the school year (I will provide one of my choice…I am leaning toward a sit-and-stand style), with the goal of transitioning completely to her loftstrands or independent walking by the end of the kindergarten school year. She will receive 30 minutes of PT in school per week, with consultation 30 minutes/month (probably more in the beginning of the school year in case accommodations are needed). E will continue to use modified seating arrangements where needed (90-90-90, typically this means a footrest). She will have Adapted Physical Education where need be; the PE teacher is quite inclusive and is very good with children with special needs. Elena will gradually learn to carry a backpack, lunch pail or lunch tray (the PT is excited to work on this throughout the year), and is expected to be close to independent in the lunchroom at the end of her kindergarten year. There is a petition to make changes on the playground (bright paint on the walking path so E can see it, and kept clear of mulch to reduce fall hazards).

How great is THAT?! THANK YOU DREAM TEAM!

4 comments:

caryanne said...

WOW. To me, this all sounds so amazing! I am so pleased that this seems to be going so well for you.

And I truly LOVE hearing all that E can do on her own. I think my Ben is similar to E in severity so seeing what she can do gives me so much hope!

Anonymous said...

HI AMY
I FELT I HAD TO MAKE A COMMENT.. MOM WAS READING YOUR PSOT BECAUSE I HAVE A HARD TIME WITH SMA;; PRINT..

ELENA'S CHALLENGES/STRUGGLES SOUND VERY SIMILAR TO WHAT WE HAD TO FACE...

I WILL SAY I TOO WAS ON AN IEP (TALKING ELEMENTARY SCHOOL) I WAS GIVING EXTRA TIME FOR GETTING THINGS DOWN ON PAPER NOTES TESTS.. I WAS GIVEN TIME EXTRA TIME TO GET TO AND FROM CLASSES(I OFTEN KEFT THE CLASS EARLY SO I COULD TO GET THE NEXT ROOM WITHOUT BEING TRAMPLED ON..

OFTEN TIMES AT RECESS I HAD FRIENDS WHO WERE ABLE BODIED WHO HELPED ME ON THE PLAYGROUND

I HAVE TO SAY THOUGH NO MATTER HOW HARD WE TRY THERE ARE STILL THOSE INGORANT PEOPLE WHO PAY NO ATTENTION AND WOULD KNOCK ME DOWN..

EVEN AS AN ADULT NOW I GET THAT.. I'LL GIVE YOU AN EXAMPLE I WAS GOING ACROSS THE STREET IN MY WHEELCHAIR AND THIS GUY PULLS OUT WAAAAAY OVER THE WHITE LINE ON THE ROAD AND EXPECTED ME TO GO BEHIND HIM I HAD TO GO BACK TO THE LIGHT TO WAIT TO CROSS AGAIN!

KIDS CAN BE CRUEL BUT I REALLY HOPE SHE HAS A POSITIVE SCHOOL EXPERIENCE BECAUSE WHEN I WENT IT WAS NOT AS POITIVE..

EVEN NOW WHEN I WAS VOLUNTEERING I HAD A KID ASK ME IF I WAS RETARDED BECAUSE OF THE WAY I WALK... ITS NOT NICE AND PEOPLE NEED TO BE EDUCATED ON HOW TO TREAT KIDS AND ADULTS WITH DISABILITES

MELISSA

GingerB said...

I am so excited for Elena's success in school! I really, really appreciate all the detail you give about navigation of the system. I didn't know yet that there was a difference between the IEP and 504 accomodations. I have a lot to learn! But really, thank you for all the details as it really helps us who are seeing thesethings in our future. I think Hannah will be smart and only somewhat slow in getting places, so I don't know what services we'll get. We mostly use Early Intervention now, and I pay out of pocket for extras because it seems this 0-3 stage is so significant, and I am lucky enough to have really close access to Shriner's for free, so we'll never go without therapy, but I worry about our school experience.

Anonymous said...

HI Amy,

I just read your posting about the IEP meeting for Elena's kindergarten. I am so happy to hear Elena continues to excel and that the school is going to accommodate her so well next year. That is amazing! I think you are very fortunate to have Elena in a school that obviously cares about it's students. Wonderful news! Also, I continue to be impressed by your perseverance and committment to Elena's progress and well being. You are a wonderful MOM!!

Rachel