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. :)


To include or not to include? I feel like a ping pong ball. "Include her. Don't include her." Crazy right? However, the purpose of an IEP is to create the most appropriate educational setting for your child, and no two children - even with Down syndrome - have the same needs educationally, physically, or otherwise.

Kellsey's IEP meeting was a little harder for me. I discussed her with Kennedy's school early on, and because of the high level of Kellsey's needs, we agreed that she needed to be in a school with an SSN room, which they don't have. So, I talked to some friends, did some research and picked a school where I heard they had a good SSN room. The people at the district agreed that this would be an appropriate school for Kellsey to attend.

While Kennedy's IEP is very much education based, my goals for Kellsey are more safety based. I have spent the last 2 years beating my head against the wall making sure she's safe - don't let her get overheated (she could have a stroke), don't let her get hurt (she doesn't feel pain), don't let her play in the water (she will drink it, aspirate and get pneumonia), don't let her play in sand (it can cause an infection in her g-tube). Paint and markers make her skin break out so stick to crayons and colored pencils PLEASE. No fruit, no tomatoes, no gluten, and please oh PLEASE don't let her put non-food items in her mouth. Don't let her get overstimulated. When she does, she self injures. She will chew her lips, her cheeks, her tongue until there's blood everywhere. What overstimulates her? Everything. (OK maybe not everything, but I feel like it somedays!) Loud sounds, too many people around, too much activity, flashing lights - get her hyped up and she pays the price later. She needs calm, routine, quiet. She thrives in one-on-one or VERY small groups. The less activity going on around her, the better. Over the last several months, her self injuring has become worse (which is common in kids with CIPA). I struggle to provide the environment she so badly needs at home and at the same time let the other 4 kids do what they love - dance, soccer, drama, bowling, the park on hot days... LIFE.

So, if I am struggling at HOME to keep her safe, how in the world are they going to keep her safe at school? Yes... teach her her colors, shapes, letters, numbers - that's fine. But most importantly keep her safe! And so I've become the ping pong ball. "Include her, but don't include her. Let her experience everything in school - she'll thrive! Shelter her, keep her safe, protect her, watch her every second. Stay calm, stay quiet - no assemblies, adaptive PE, no recess on hot days and please oh please stay away from paint and markers and food and bandaids that can make her skin blister."

Am I over paranoid? Maybe. But I've cleaned up more blood in the last year than I can even comprehend. I've taken her to environments where I thought she'd be fine, and she wasn't. I can stop her from chewing when I'm right in front of her, but at night... when she's in her car seat... any time she's out of my sight, she's fair game for injury. I've taken her out on a 60 degree day, thinking she would not overheat, but because there was full sun, she did anyway - and she was miserable. I'll take that cloning machine now!

So Kellsey's IEP meeting was harder for me. You see, this is a full inclusion district - almost to a fault. Yes, they have an SSN room, but kids don't stay there all day - ever. Kellsey's IEP is currently written for 79% inclusion in a regular kindergarten classroom (with a one-on-one aide of course). She'll be in a class with at least 20 other kids. I know her well enough to know that she will not thrive in this environment. Educationally, she's not ready to sit in a kindergarten classroom and actually learn anything. She needs basic knowledge still - colors, shapes, animals, letter recognition - things that she just hasn't picked up on yet. She will be overstimulated with that many kids around and I'm terrified for her safety.

I left her IEP meeting a little frustrated because I felt like they weren't taking me seriously. They smiled, they patted my arm, they assured me she would be fine, that they would keep her safe. I had to take Kellsey with me to the meeting... on the way out she got overly excited saying goodbye to everyone and that night she chewed her cheek raw. Safe. Just keep her safe.

Do I believe that Kellsey's IEP is appropriate for her? No. I don't. So what are my other options? Because of her RAD I can't homeschool her, she won't learn from me. She would be safer, but she needs to learn. Do I try this school year and see what happens? Maybe. The good news is that I can call an IEP meeting anytime I want. That's my right. If she wakes up covered in blood every morning, I will know something needs to change... but I feel like it will be a fight. We'll see.

Include her... don't include her. Do what's appropriate for BOTH of my girls and set them up for success, not failure. It's a hard ball to balance, but hopefully at the end of Kellsey's next school year, I'll be saying, "It was fabulous! Look how far she's come!" We'll see...


Acronym Key
IEP - Individualized Education Plan - This is to help kids who have special needs or needs accommodations get the education they need to thrive. Every child's plan should be different, hence the word individualized

LRE - Least Restrictive Environment - The law says that every child must go to their least restrictive environment. This is the setting where the child can thrive socially and academically. Every child with an IEP can technically have a different LRE based on their needs. For some it's a regular classroom and for others it's a special needs room - for some it's all day, for others it's not.

SSN - Severe Special Needs - in some places this would be called the Life Skills room

CIPA - Congenital Insensitivity to Pain with Anhidrosis - in short, Kellsey doesn't feel superficial pain and she doesn't sweat.

RAD - Reactive Attachment Disorder - refuses to connect with permanent caregivers while she craves attachment from adults who she knows are not "permanent" in her life.


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! ;)