Thursday, April 7, 2011

13 People, a Sheet of Papers, and a Box of Tissues

There's no doubt about it, IEP time is pretty emotional for parents.  Maybe it is for educators, too, but I kinda doubt it.  So much about your child's future well-being is riding on what happens in that meeting, and while you, as parents, are considered a part of the IEP "team," having 13 people in the room, only two of whom are parents and the rest teachers, vice principals and therapists, kind of tips the scales rather unevenly.  That's not to say that the schools don't have the child's best interest in mind, but with budget cuts so widespread across the country, I've heard horror story after horror story of out-and-out fights  for services and appropriate placement. 

You can't help but go in on the defensive.

Especially when the wording sucks

A week or so before the IEP meeting, the parents are given a draft document, with some generic recommendations put together by the IEP team (not including the parents, mind you, as the parent meeting has not yet been held).  These drafts are actually very helpful - they give you something to go on, to discuss, and to use for preparation ahead of time.  And that's all it is...a draft.  Definitely not etched in stone.  Think of it as an outline  of topics for discussion. 

But some of the information on this document still hurts.  And still works you up into a lather, mind spinning out of control, heart palpitating, hands sweating, eyes watching the clock until each day/hour/minute ticks down to the moment in which you sit down in that conference room, papers spread out in front of you, facing those 11 others.

When a page titled "IEP Services - Least Restrictive Environment - Placement" has a section called "Placement Decision" with a box checked off that says, "Separate Class," what are you supposed to think?  Well, I can tell you, it sent us into a spiral of hurt, anger, frustration and serious concerns for the ability of the educators to make any decisions for children with intellectual disabilities at all, let alone to even be allowed to teach them.  Seriously, we were practically ready to pull Samantha out of school.  Well, I exaggerate a little, but how could we allow someone to completely disregard the potential of our child by automatically recommending a completely self-contained classroom for her for Kindergarten?  What ever happened to that all-important word, Inclusion

So, to make a long story short (yes, I know it's too late already),  after more than half an hour of us voicing our concerns, it was discovered that our fears were for nothing.  The box was checked as an unfortunate result of an issue with the program that generates the draft IEP


Needless to say, the pressures and worries of the last week all came out at once, and I was grateful for the box of tissues sitting on the table.  I would say I embarrassed myself by crying like a baby, but I think I made a valuable point to the other members of the team.  They were instantly sympathetic, and apologetic.  One even looked like she was about to cry herself. 

Why does this have to happen?  This process, while difficult enough for so many other reasons, really didn't need to be complicated by a default or a lack of clarity for the parents who don't create/read/study IEPs on a regular basis.  This little point caused so much stress to an already stressful situation, and while I was relieved, I'm also still a little angry.  Surely we can't be the first people to have had a problem with this...are we?

In the end, the meeting ran too long, and we'll have to re-convene soon.  The major point of placement has been agreed upon, however, and the recommendation was full-inclusion with a 1:1 aide for as long as is necessary (necessitated by Samantha's tendency to shut down in group settings and not participate in group class activities - a goal to correct that is on her IEP, too), to be weeded out when she's ready.

There were a few more points that we went into the meeting prepared to argue, but after hearing their sides to each of those points, we understand their reasoning and are good with the compromises we established.  I'll expound on those another time, after the next meeting.

How would I sum up this thrill-ride, laugh-a-minute experience in one word?



Lochhead Family said...

Pfew... when I heard they suggested Sammi be in a separate class, I wondered what hope there was for the rest of us?? So glad it was a software error, but sorry you had to be put through the emotional centrifuge. Good luck at the next meeting!

Jenny said...

I almost started crying when I read that line about Sammi in a seperate class...I'm glad it went well for you though. I think our system is a little different up here but I know I am going to be a mess that first meeting with Russell...I tear up even now just thinking about it!!
Love reading experiences from you Moms ahead of me in this, its all very helpful!

Lacey said...

I'm not looking forward to this with Arina. With Jax its easy, he could never go into a classroom, and I know he is never going to be close to typical. But Arina is such a rockstar, and I'm still amazed at how fast she learns. But I think when we get to school time things people may put on her IEP may be hurtful to me, and I know I'll feel differently than they do!!

Alicia said...

here is way too different, for good and for bad.

imagine we took Elias for early intervention services to a special ed school, since day 1 (Elias was 40 days old) they were constantly telling us that all this early work will pay off for inclusion, well, when he was already 3 and half, they told me he would NEVER be able to be in a class with typical peers, because he will NEVER learn the same way, becaue he DIDNT had the skills to be in a classroom with 20 kids!

well excuse me, but at 3 years old every kid wants to play, no one knows classroom rules etc. so how could they know he will never do that? well, we took Elias off that school, and we searched for other options. I can say Elias is the most well- behavior kid on the class, or that he always pays attention and always follow instructions, but he can do it!! at least now!!

sigh, well glad you had an ok, and im glad that Sammi would not be in a separate class I almost yelled some inappropriate words lol

Zoey's mom said...

Sorry for the tears.The whole process can be so emotional,especially when you walk in thinking you got it all under control and then a checked off box,or in my case"6-9 month cognitive age range"line,can send you into a tail spin.Happy that you can pretty much put this behind you for another year and knowing,Samantha is just going to blossom and thrive and do a little bit of teaching of her own along the way!

Cathleen said...

In theory I'm happy for you guys but was honestly hoping your school district sucked and the only solution would be for you to move to MD and our girls would go to school together for the next 9 years. :( But happy for you nonetheless. :)

We have our IEP meeting next week, and haven't gotten any of the materials yet, although the psychologist gave me a head's up on what she was thinking (which doesn't matter anyways because we're moving) but wondering since we don't have her official written eval yet, if she's changed her mind on what we talked about a few weeks ago?

I just organized all our crap (yes crap) i.e., evaluations, IEPs, etc from the past year. She has two VA IEPs and two NYC IEPS just in the past year. And a gazillion evaluations. I put them in a huge folder and honestly was tempted to burn them; but realize I might need something in there at some point in the future. Ironic that as I'm cursing the system that evaluates and judges my sweet daughter, the emergency news story on TV is how the current NYC School Chancellor is let go and they've selected a new one. And she was only there a few months, as the last one was fired as well. NYC is a big mess! Hoping our girls' futures are bright as we begin the 2011-12 school year!

my family said...

we have ours after easter....DREADING IT
why do we have to defend our children when they should be trying to help them

Stephanie said...

Congratulations on a satisfactory placement!

We won't be doing inclusion next year for Aiden. The teachers in the typical ed classes don't want a child with special needs in their rooms. Well, one is adamant about that and the other doesn't like the idea, but will comply. After a long discussion with his teacher now, we both feel that Aiden would not benefit being in that type of environment. Not exactly the least restrictive...

Michelle said...

how frustrating to have that box accidentally checked! I'm glad to hear that is not how the rest of the team really felt though. Oh those tissues... every single time I promise myself I'm not going to cry, but I always end up doing so. I wish I had more control over those tears!

RobMonroe said...

That is one of the biggest problems with standardization of ANYTHING. There is a default whenever a database is involved. I'm sorry that you have had that experience, but glad that it was erroneous.

Roo's Mom said...

I'm convinced that most kiddos with Down syndrome could be in the regular classroom with adequate support. I put Roo in our Catholic school because our home district refused to supply her with a 1:1 last year. I just got to the point of having to decide whether or not to hire an attorney, and already knew that my district has some very high profile attorneys on their payroll. Thankfully we had another option, and I totally feel for those who do not. Sammi will thrive in the regular classroom, and her peers will totally benefit from knowing her!

Lori said...

Oh, wow -- that would be an emotional roller coaster. I am so glad that it worked out in the end!
We just had Anna's first IEP for pre-school. Seeing her developmental delays/developmental age spelled out on paper is a little rough - but I try to keep it in perspective in that we have to have some sort of measurement in order to judge her progress and to know what she needs to work on. But, ugh! It can really sting.

Crazy Beautiful Love said...

I don't know what I would do! You are stronger then me. I know I have years till I am facing the first IEP but I'm already nervous...and I work in education.
I know it's emotional for you. We are our kids adovcates. Period. They truely only have us and that comes with an emotional toll.
Thanks for sharing that Becca.

Team Lando said...

I AM a sped teacher who gets emotional at meetings... I am exhausted after them! True pre-pregnancy, most true pregnant with Ellie's diagnosis. We'll see in a few weeks how I do!

Melissa said...

Having that box checked would have instantly put me in the wrong frame of mind for hte meeting. I went to a really great symposium a couple of weeks ago and this reminded me that I still want to do a post with some of my notes...They had some really great suggestions for talking with gen ed teachers and for some simple IEP goals to have your child be a part of the classroom easily. One example goal was to have the child ask a peer for help before a teacher or aide. Just one more easy way to build relationships!