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! ;)

The Dentist

Whew! What an afternoon! As I mentioned yesterday, Kameron had a dentist appointment after school today because he broke his retainer. They had to remove it which was not so fun for Kam as it was glued to his back teeth... or something like that. When they finally got it off he was very relieved! They are going to fix it or make him a new one if necessary and he'll get it back on next month. Now he's getting used to being retainer free for awhile.

I ended up taking Kennedy in as well to see if they could check her out... a few of her bottom baby teeth have the permanent teeth growing in behind them. We got one of them out on our own, but the other two weren't budging. One of them was causing her some pain so I just wanted to make sure everything was ok. WELL, her dentist decided to just get them both out today.

They started by using just novocaine but she was NOT happy about it. She kept telling her dentist, "You don't TOUCH!" LOL Finally he tried some Versed and when that didn't work they moved onto laughing gas. That did the trick... she was quite... relaxed by that point. One of the teeth came out easily, the other one was harder, and they both had LONG roots on them still. She doesn't remember them coming out at all, so I guess that's good! She's still a little loopy and unsteady on her feet and she says her chin feels "silly", but she's excited about the tooth fairy coming tonight. ;)

While her dentist was looking around in her mouth, he discovered that her top front tooth is loose as well. That's not good because that's a permanent tooth! He took an x-ray to make sure there was no trauma to the tooth, and thankfully it looks fine so he's hoping it will tighten back up on its own. That would be bad if it fell out!

Anyway, three hours after we got there we got to go home. Whew! What a crazy day!! Bring on Summer, I'm ready!!!

Home!

Kellsey is home and doing GREAT!! She woke up and immediately sat up and started playing. They were shocked! haha Her esophagus looks beautiful!! In fact, the GI doctor said that she couldn't even tell where the battery was! THAT is what we wanted to hear! Praise God! There is still a risk for scar tissue forming long term and they will have to keep an eye on her always, but for now she can go back to a regular diet (for her anyway) which is fabulous!!

She is resting now and Keeghan and I are eating some lunch... in about 2 hours I will pick up the other kids from their last day of school and I'll officially have a 7th grader, 5th grader, 2nd grader and two Kindergartners! CRAZY!!!

More later...

Quick Kellsey Update

It's been a long day and I'm heading to bed soon, but I wanted to update really fast. Kellsey had a GI appointment today... it all went fine, but her doctor decided to go ahead and get another endoscopy and MRI done. Kellsey is still on a soft food diet and they really can't lift that restriction until they are sure she's healing well. Obviously, that can't be seen from the outside. They had a cancellation for tomorrow so she goes in tomorrow at 9:30 for this procedure. Please be praying for LOTS of evidence of healing!! If they DON'T see marked improvement, she'll stay on the soft food diet and they'll schedule her for more tests in the next couple weeks. She's been doing great with her eating, so I'm REALLY hopeful that all will look great tomorrow! :)

I will update again tomorrow afternoon... it's Kassidy, Kameron and Kennedy's last day of school and then Kameron has a dentist appointment to fix his broken retainer that we haven't even paid off yet *sigh* . But that's another story for another day. ;) Thanks in advance for praying for Kellsey!

Dangers of Button Cell Batteries

Kellsey and I were on our local news this morning talking about the dangers of button cell batteries. I hope this helps local families become aware of the dangers that could be lurking in their own homes. Here's a video of our clip. A huge thanks to KOAA, Jen Horbelt, and Dr. Kurbegov, Kellsey's GI, for helping spread awareness!

Kennedy and Keeghan's Birthday Party

Today was Kennedy and Keeghan's birthday party... a little bit after the fact. We've all been so busy with dance and soccer and school and other things that today was literally the ONLY day in May we had open for a party! We had it at their dance studio (because we practically live there anyway! haha) and Ms. Debi set the whole party up! All I did was pick a theme and give her a guest list and she did everything else... best party ever! :)

 The Birthday Kids

 Yummy cakes from Marvel's Cake Boutique

 Treats to eat! 

 Goody Bags!

Getting excited about her party

 Hailey is teaching the kids a new dance

 Jaemen doing his thing! 

 Learning the moves... 

 And pose! 

 Mia 

 Jordyn posing

Jordyn and Hannah

 Keeghan and Matthew... Keeghan is feeling the music lol. 

 Hannah and Lila

 Freestyle! 

 Go Jordyn!

 Go Hannah! 

 Giving Hailey a thank you hug

 Cake time! 

 I'm ready to blow out the candles! 

 Making a wish... 

 Yum!

Can't smile. Mouth full.

Time for presents!

Cool!

I love it!

 Look at this!

Nail polish!

And that's all, folks! Thanks so much Debi for a stress free party! The kids had so much fun!!! 

HAPPY BIRTHDAY KENNEDY!!!

My beautiful Kennedy, today is your birthday! I know you've been telling everyone at school that it's your birthday every day - for months - but today it's really, truly, seriously your birthday! For real! I know you are excited to get to school today and tell all your friends, "I'm EIGHT!" and I know they will be happy for you. I can't wait to bring you cupcakes later and go out to dinner tonight.

You have grown so much this year, Kenn! You are doing so great in school and I've been in awe as I've watched the progress you've made there and at home and dance and everywhere else. You work so hard at everything you do, and I know sometimes it's frustrating and you feel like everyone else is doing things faster and better than you, but when you finally "get it", you shine so bright... and everyone sees that and rejoices with you. You have a lot of cheerleaders out there baby, more than you even know, and we're all cheering you on.

I can't wait to see what this next year holds for you... Kassidy and Kameron have officially dubbed you a "big kid" and I know you take that title seriously, so I know that this year will be another year of growth in every area of your life... just don't grow up too fast sweet girl, remember that no matter what you'll always be my Sincess. I love you so much birthday girl... a million, billion, trillion!

Love,
Mom

Button Cell Batteries in the News

Whew! I don't know what spurred the national attention, but kids swallowing button cell batteries has been in the news ALL over the country today! Have you seen it?! Thanks to all my FB and blogger friends who have been sending me links, and texts, and messages about the stories. I'm GLAD that this issue is getting the attention it deserves. One of my friends said she had NO idea it was this common. I didn't either until Kellsey swallowed two of these batteries almost 2 months go.

Kellsey is doing ok now. She was one of the lucky ones. Since her hospitalization I have been reading stories about other children who have had to have part of their esophagus removed, they've had to have g-tubes put in and could eat no other way for many months until they healed. Honestly, I'm a little in awe of how well Kellsey HAS healed. From what the doctors think, those batteries were in her system much longer than some of the other kids who have been seriously injured, almost to the point of death. I often wonder how much her pain intolerance played a part in her healing... we'll never know for sure.

Right now, Kellsey continues to be on a soft food diet as her esophagus heals. Thankfully her favorite foods ARE soft foods so she's not having too much of a problem with this. She goes in regularly for check ups with her pediatrician and her GI doctor and will have to have more tests - MRI's and endoscopies - at some point to make sure her esophagus is healing well. There is always a risk for scar tissue forming where the abrasion was. If that happens, that tissue could potentially cut off her airway, so we have to be diligent in watching her breathing, looking for changes, especially since she can't TELL us if anything is wrong.

Once again, I must beg you all, if you have small children, check your house for these batteries! They are in more than you think... they're everywhere!! Please read this post for a list of things to check and what you can do... then check out all these news articles. Every 3 hours a child goes to the ER because they have ingested one of these batteries. Every 3 hours... that's WAY too much. Something has to be done.

Today Show - Swallowed Battery Hazards: ER Visits Double

Vanderbilt Childrens Hospital - Swallowing Button Batteries Can Be Serious

ABC News - More Kids in ER from Swallowing Batteries

Shine - More Batteries to Blame for Kids' ER Visits

MSNBC Nightly News - Hidden Hazard

Energizer to Raise Awareness of Button Batteries

And check out Emmett's Story. His story needs to be heard. On their blog they are sharing stories of other kids who have swallowed these batteries... some of them were lucky, like Kellsey, others... not so much. I can't stress enough how serious and life changing this can be.

Awareness is key. Like so many people, I had no idea about this danger or the havoc it could cause until it happened to us. Be aware. Be on the lookout and safeguard your home.

Q&A #240

You might check into Windows Live Writer.. I update my blog with it. It is a free download. I never see the blogger changes and haven't had to go to the blogger site to do anything in a very long time. Windows Live Writer makes blogging very easy and it logs into blogger for you and everything. :) 
Thanks, I will check into that! I'm still not digging the new layout! LOL 


So where are you on the countdown to the end of the year? You didn't start much earlier than we did, but we go until June. So no countdown has begun here yet. I haven't even gotten CJ registered for Kindergarten yet ;). It's okay though they assured me they just sent out the Kindergarten packets today so I'll get that next week sometime probably and registration won't even begin until sometime in May. The fact that he's starting Kindergarten this year freaks me out!
Keeghan is done on the 17th and the big kids are done on the 25th. That's later than when we were in TN but we started a little later here. And ironically we didn't run out of snow days here like we always did in TN! LOL I had to get the kids registered for Kindergarten! They start in January here! I didn't get Keeghan registered until February because I lost his birth certificate (GRR!) and they were telling me he may not even get to go to his home school because I waited so long! I was freaking out because he was so excited to be able to go to school with Kameron and this will be the only year they'll be together. Thankfully the principal fixed it and even got him a full day slot (but I have to pay for that. Bleh!). Kellsey of course had to be registered early too so we could get her IEP in place and all that fun stuff. 


Is that Ivan from So you think you can dance?? 
He looks like him.
That is way cool. 
Yes... now that you say that I think they did say that's who he is. I'm so oblivious! LOL 


What does "special Angels" mean? The video is SO PRECIOUS! 
The creator of that competition (Tribute) has a relative (sibling maybe?) with special needs, so he created a division called special angels for groups that have kids with special needs in them... Kennedy's group has Kennedy of course and her friend Jaemen who also has Ds. :) Their group got to enter the competition for free :). This is the only competition that's done that so it was pretty neat! 


Did you cry? I think I would have cried. That was too cute. She is adorable! 
I did cry. Just a little... ok a lot. But only a few people saw me so it doesn't count. Shhh! LOL 


That was BEAUTIFUL!!!!! How old is she?? 
Hailey is only 11... I can't wait to see her when she's 18!! :) 


So who are you using to edit pictures? Pic Monkey? I actually think of you ever time I use it, lol. I like it a lot. Super easy to use. Pretty similar to picnik too.
Yes, picmonkey for now... I don't like that we only can upload one picture at a time though. It bugs me. Hopefully they'll fix that soon... and I need the collage feature! LOL 


I cant believe how much keeghan looks like kameron from a side profile!! Ive always thought they looked alike, but just alike like brothers. Those side profile pics of keeghan make him look like kamerons mini twin! Too cute!!
I agree!!! Sometimes I don't think they look all that much alike but every once in awhile I will catch a glimpse of Keeghan and think, "WOW... that's Kameron." Of course they are both mini versions of their daddy! ;) 


Does Keeghan attend a religious school or does his public school allow prayers? just curious!
He attends a Christian preschool :). They have chapel once a week and say prayers (actually it's prayer in the form of a song) before snack and lunch. He's learned so much there. I have some hilarious stories he's come home with that I should really blog about sometime! 

Keeghan's Birthday

I'm a little behind on editing pictures... picnik.com closed down and so I've had to find a new place to edit my pictures. You all know how I feel about change! ;) Tonight I finally decided to get some edited. I have SO many pictures that I've taken this month that I need to go through, and more to come... all in time, I guess!

Anyway, Keeghan had a great birthday! He started off with a birthday party at his school with cupcakes...

 Keeghan with his cool monkey cake... 

 He was almost too cute to eat... almost. ;)

The birthday boy!

 Singing their prayer before snack... cupcakes at 9am! YUM! LOL 

 Waiting proudly while everyone sings happy birthday to him 

Blowing out his candles

What a mess! :) 

Kellsey had fun at the party, too! :) 

Then after school he got to skype with daddy and he got to open one present so daddy could watch... 

Showing daddy his present

 What IS this thing?! 

Uhhh... well... it's green!!

 Ooooh! Toy Story Squinkies! 

 Look, dad!!! 

I'm a dragon!!! 

Then after the other kids got home from school, we headed out to dinner. Keeghan chose Red Robin. There he opened the rest of his presents from us and from Grandma! 

New monkey clothes!!

 And jammies!

 A sprinkler!! (Maybe one day it will be warm enough to use it! haha)

 A puzzle! (Kassidy was texting with her best friend in TN giving her a play by play of Keeghan's gifts! haha)

 A Terrarium! We're going to grow plants! (In theory lol) 

 New cars!

 This is awesome!

 WOW! A fire station!!

And the rest of the gang... 

It was a fun day!! Still can't believe my little guy is FIVE!! :)