Saturday, May 26, 2012

IEP Meetings (LONG)

Ahh the joy of Spring... IEP meetings are always the hot topic in the Down syndrome community - to include or not to include? To fight or not to fight? What does LRE really mean and is our school doing it RIGHT? How do I get my child the services appropriate (not best) for him/her? Do I push for my neighborhood school or send my child where the district wants him/her? What about repeating a grade? Is that good or bad... do I even have a say in that matter?

OH yes, IEP meetings are FUN. You go in with your stomach in knots, try not to cry when they tell you just how far behind your child is and try not to rip their heads off when they assume that they know your child better than you do and argue with you about what's best for them. How's that for a run on sentence? ;)

Thankfully, Kennedy's IEP meeting was easy peasy. I've been feeling her team out for a few weeks now... I have spent this last year building trust, because you know... once bitten... I figured out quickly that we're all on the same page with Kenn, which helps A LOT. We all agree she's had a fabulous school year. She's made lots of friends, her speech, writing and reading have improved a ton! She struggles most with math (and dreads math class, math homework, and everything else math related), but if you catch her in the right mood, she'll do it. She lines up when coming in from recess almost 100% of the time now which is huge! She thrives on positive reinforcement, loves to learn (especially when she "gets it"), and loves to perform and dance just about any time she gets a free second. HA! She needs to work on using kind words and having empathy for her friends. With improved speech comes the other side of the coin... she tells you exactly what she thinks at all times, whether it's nice or not. On a good note, you never have to wonder how she's feeling. ;)

Kennedy's IEP for 2nd grade will look much like this years... 90% inclusion with pull outs for therapies and some resource time (especially with math!). She'll have her same paras which makes me very happy! She has accommodations for test taking, placement in the classroom, and other things to help make her successful. We talked about different IEP goals (she mastered almost all of hers this year!) and what's most important for her learning NOW. We all put our heads together and I believe Kenn has another great year ahead of her!

As for her general ed classroom, my only request was that she goes to a teacher who wants her. There are many fabulous teachers who are not prepared/comfortable or have the want to have kids with SN in their class. I'm ok with that. I just want her to be in a classroom where she is wanted. Two of the second grade teachers have asked for her. That makes me happy. :) I have no doubt that Kenn's 2nd grade year will be as amazing as this year was. She has a strong team behind her who loves her and is cheering her on... and they believe in her. So we finished her meeting and ate pie. I wish all IEP meetings could be this way. :)

OK it's summer... no more thinking about school right now. I'm off to the mall with my kiddos! :) If you made it this far, you're my hero! ;)


Joy said...

God picked you to be Kennedy and Kellseys mommy for a reason! You works so hard to make sure their needs are met and that they are healthy and happy. You amaze me!

Kathyb1960 said...

Hi Renee!

After reading about your experience w/ Kellsey's IEP meeting, I thought I'd tell you about another little girl and her family who live in CO. I **think** they live in CO Springs, but I'm not sure.

Their blog is, and Ella was born was CDH. Tina is the Mom. While a lot of kids don't have many problems as they get older, Ella has had a LOT of problems. She is 41/2, she doesn't talk much, other than making sounds. She's on O2 24/7, has a G-Tube, can't swallow things like water...all food & liquid has to be thickened, etc....has other medical issues as well.

The reason I'm telling you about her is b/c her mom is also dealing with her IEP, and posted about it in her last post, and she was talking about Homebound services. Would that be something Kellsey could have?

Anyway, check out what she says and maybe it will give you other ideas! She also talked about going to a PEP Conference in Colorado. Don't know if you knew about that or not.

The latest post is the one where she talks about their IEP and things like that...about half way down the page.


Heather said...

Girl, you know I've been following your blog for a minute when I know all of those acronyms by heart!!! :)

So glad Kennedy's IEP went well. That girl is such a rockstar, and hey - math was my weakness too as a kid! (I lost my college scholarship because I failed statistics - twice! - but I got through anyway...) As for the OTHER rockstar, Miss Kellsey, I know you worry, it's just your mama bear nature. Maybe this will give her an opportunity to learn and grow? Maybe she can make some friends? I know it's hard but I believe God has big plans for that baby girl, otherwise He wouldn't have brought her this far!!

Jillian said...

Hey, followed for years but rarely comment. I'm a sp. Ed teacher in NC and foun kellseys situation to be so frustrating. It's hard when you want o do what thenparets say but are held back by county rules. Just hold out hope that those teachers might do a little extra undocumented to help your girl.

Question though. Does kellsey speak? I was user the impression she was not yet talking?

Stephanie said...

Have you considered getting her homebound services? That may be an option at some point. Take it one step at a time. I have IEP meetings all the time. I know exactly how frustrating it is. I live in the worst district in our state of NC for special ed services. Good luck & hopefully you'll hear some great things.

Lynn said...

Know that I'm always here praying so very, very hard!
Philippians 4:6-7 Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
My email address

Island Baby said...

Could a teacher come to the house for Kellsey instead, or could you maybe swap homeschooling with another mom with a kid who also has RAD?
Also, is RAD a permanent condition? Will she ever learn to bond with you and your family? In what ways does she not bond with you ?

my family said...

oh renee I cant imagine how frustrating it must be....I know how stressed I was before william's iep this spring... I think Id rather just hide under my bed:)

Kristin said...

IEPS are so frustrating.

Kate said...

Renee, since we're friends, I am going to risk saying something that I truly hope does not offend you... and I am hoping that you will "hear" my heart on this and understand my intention in saying it...

It sounds like what Kellsey needs to function & do well is the complete opposite of what "normal" is for your family. I mean, you're an active, on-the-go family, yet Kellsey needs routine, structure, calm & not a lot of external stimuli in her environment? How does that work with 4 other kids in the house & your busy routine? It must be really difficult to balance Kellsey's needs against those of the rest of your kids.

Regarding the IEPs, I have no advice or commentary since, as you know, I am still wrestling with what I should do with my own autistic + RAD + Ds kiddo while being a diehard homeschooler with my other kids. It's not an easy road to walk & yours is even more challenging because of Kellsey's inability to feel pain. I can understand your concern that the school won't be able to keep her safe. I think you're right that they won't be able to. I don't think most people can wrap their mind around the actual reality of what life with a child like Kellsey involves. For what it's worth, I admire your dedication to doing whatever is best for Kellsey, regardless of what that looks like.