My Menu Plan Monday.

Busy week ahead. Paul's working tons of hours. Double shifts and all. And quite honestly, I've got so much going on with Carly and the school. The very last thing I want to do, or have time to do, is spend hours in the kitchen. Therefore, I'm going to take a break from cooking actual meals every day. What I call meals, that is!

Monday: Tacos & corn fritters
(I'll be frying up my meat today for both Mon & Tues dinner)

Tuesday: Chili and grilled cheese

Wednesday: Baked spaghetti w/meatballs, salad and garlic bread

Thursday: Chicken, mashed potatoes/gravy

Friday: Pizza night

Saturday: Out to eat

Sunday: crock pot meal



Thought I'd share a simple recipe today. These are called, Snack Bars.

1 1/4 package of Graham crackers
1 C chocolate chips
1 can sweetened condensed milk



Spray a 9x9 baking dish with cooking spray. Break graham crackers into bit size pieces. Place in a small mixing bowl. Add chocolate chips then pour in sweetened condensed milk. Mix gently. Pour mixture into 9x9 pan and bake for 30min @ 350.
Allow to cool completely before cutting.


See those graham cracker pieces? You want them a tad bit smaller than that. Not crumbs though. You could even slack on the chocolate chips. It's a bit of a chocolate chip overload. For some reason, the chips on the top of the snack bars, don't melt up nicely. Not sure why that is. So don't leave this in the oven waiting chips on the top to melt. Aint gonna happen!
Also, make sure this is cooled completely. Carly insisted on having some before it cooled and it was a MESS! Good, but a mess.

I may not be blogging much. Several things going on this week. Many of these things involve Carly. I'm waiting to hear from the Special Ed Director, who rudely SLAMMED the phone down in my ear on Friday afternoon. I hadn't even gotten into a conversation yet. The only thing I was able to say, was "Hi K, this is Joany" SLAM! I did call back immediately and left a not so nice voice mail, telling K, "I certainly hope that wasn't an intentional hang up on me". I never did hear back from her. The acting Superintendent and the Board President both received calls from me that afternoon. Neither were too happy that a school administrator hung up on a parent. I will also be checking out a couple of other schools this week. I have to place a couple calls first.

If you feel it in your heart, please say a prayer for us to get through this mess with the school. All we want, is what's best for Carly. We are suppose to be going into an emergency IEP meeting this week. Although no one has set that up yet.

Have a good week everyone.

Thursdays rant!

I don't know about anyone else, but I feel that this has been the longest week ever! I'm so thankful tomorrow is Friday.

Today was a busy day. Off to mail taxes this morning. Banking. Then to my moms to compose a letter to the School Board, Special Ed Director and the Elementary Principal. That letter took me over 3 hours to complete. I'd type it. Mom would proof it. I add things to the letter. Took things out of the letter. It was quite the process. After the letter was finally complete. I printed off a copy for each of the above and headed off to the school to hand deliver each letter.

Arriving at the school in time for recess. I kind of planned it that way. I wanted to see if Carly was outside today. I told her this morning to go outside at recess and play with her friends and have fun. Course, I tell her to have fun every single morning as she is waving and blowing kisses at me from the bus window. So, I get to the school and head outside. I couldn't find her. Shocker..likely 'cuz there are 6 classrooms out all together! I finally asked a playground aide, who kindly pointed Carly out to me. I stood back, in the shadows so to speak. I did not want Carly to see me. I want to observe from afar. If she sees me...she clams up. At first, I was not too happy about what I was seeing. Carly just standing, watching. Watching the kids climb and play on the monkey bars. I know she was wishing she could climb and play too, but she can't do that without assistance. Eventually, she plopped down on the ground and watched. It took all I had within me to not go to her rescue. But, I just watched. Finally, after about 10 minutes a couple of little girls from her class came and sat with her. I couldn't hear what was being said, but I saw the three of them laughing and tickling each other. Until Carly had had enough and pushed their hands away. Then, all three girls jumped up and ran. Yes even Carly. When Carly runs, it's nothing like her peers. Thanks to that stupid blood infection that caused her brain to swell..leaving permanent damage/weakness to her left side. When you watch Carly walk, she walks with a very obvious limp, for lack of better word.

Next up, the slide. Carly climbed the play structure and headed to a slide. Then she changed her mind and turned back around. I was disappointed. But then, to my surprise she headed to another slide at the opposite end of the play structure. She went down! I was so happy to see that. When she got to the bottom, she was all smiles! She was having fun. Something that doesn't happen all to often for Carly while at school.

As recess went on. I watched. She and her 2 little friends walked over to the asphalt, got into a circle while holding hands. Swinging their arms and giggling. It melted my heart. And then the whistle blew. It took the recess aides a couple of minutes to convince Carly that it was time to go back to class. Eventually she complied. Off she went.

In regards to the letter. Paul and I have put in writing our concerns including, asking for a Certified ASL (sign language) Para Pro., for next year. We've informed them that Carly will be going on a reduced schedule. I included the fact that we feel she is bored. Is receiving very little interaction from her aide and teacher. We know she doesn't get any encouragement. We've requested that she immediately be removed from Spanish class. I mean seriously. This little girl barely speaks English. Spanish class is a big old waste of time. For my daughter that is. I included many issues that you all have been reading about throughout this school year. I'm sure this will grab some major attention. At least, that's what we're hoping for. We just feel like we need to get a grip on this. NOW. It isn't going to get any better unless this school knows that we mean business. I'm through taking crap from this school.

Dr. Phil is on right now. They're talking about special needs kids being abused at school. By the hands of the so called professionals. Unfreaking believable what I'm seeing on my television. If I EVER saw, or found out that anyone at that school, or any school for that matter, abused and I mean physically abused Carly. I'm quite certain, I would kill them. There, you have it. I would kill someone over Carly. OMG. One teacher actually killed a student by restraining him. This teacher was a female, 6ft tall and over 230lbs. She restrained this boy (7th grader) face down on the floor and she sat on him. She crushed his chest. So badly so, that the coroner said it was comparable to a car crash victim. Guess what?? This teacher didn't even go to jail! An attorney/special needs advocate is on the show too. She advises parents to be aware. Especially to kids who are basically non verbal. Which Carly is considered by the school. Great. Just great. I should have turned the stupid TV off.

Like I said,,, I'm so thankful this week is almost over. Whew...what a week!

Sorry for venting. I promise, I will stop. First, I would like to thank those of you who are leaving me comments of encouragement. It means quite a bit to me. Hopefully, through our awful experience, it will give you all a heads up when your little ones start school. I didn't have any idea what we were in for. Man, what a ride.

Sadness.

Yesterday, after I posted that downer of a post. I received a call from Carly's resource teacher. Carly goes to the resource room every day for 30 minutes. The classroom, gen ed teacher wanted Carly in there most of the school day. I came down hard on her for that one. I won! Anyway, I get this call that Carly was acting oddly. So, I head to the school. They didn't know I was coming. I like it that way. If they know I'm coming...they're ready for me.

First stop; the playground. It was Carly's recess time. Only, she wasn't outside. Hmm??!! I found a playground assistant and asked where Carly was. She told me she didn't know. She had looked for her, but hadn't found her. So, I then asked this lady if she could tell me how often Carly is out for recess and what does she do during recess. This lady told me everything. How Carly rarely is outside. And, when she is out she basically will just sit on the sidewalk and watch everyone. I can't blame Carly for that. There are 6 classrooms out at the same time. It's CRAZY out there. But, in the back of my mind, I'm thinking....why isn't the aide encouraging playtime at recess?? Why isn't the aide encouraging play time with friends at recess??? Why isn't the aide letting Carly swing? Carly loves to swing. Why is Carly just sitting, watching? That's not fun. That's sad.

Next stop; gym class. Well let me just tell you. My heart broke into a million pieces. They went to gym..(Carly had no idea I was even at the school) Carly did as she was suppose to. The boys line up on one side of the gym and girls line up on the other side. Next came time to run laps. Carly sat down. No one went to her to encourage her to get up and join in. Again, Carly is very leery of kids and their craziness. She is well aware that she has balance issues. Rambunctious kids really put her on guard. And that's fine. But, not one adult in that gym class encouraged her in any way shape or form. The activity for gym that day was soccer. Carly's option was play or sit. Well, the gym teacher KNOWS she is very guarded to play that type of sport. Let me tell you, that soccer ball was flailing around like crazy in that gym class.

Next stop; a chat with the gen ed teacher. She told me that Carly didn't want to go out for recess. Which I can't figure out. She LOVES to go outside. I can't keep her in this house. She will stay out all afternoon. We have to drag her into the house for supper time. I asked the teacher what Carly did while everyone else was outside, getting fresh air and burning off some energy. She said, "I told Carly is she stayed in, she had to lay her head down and rest". How boring for Carly? 25 min's of laying your head down. Then off to gym class to sit and watch for 30 min's.

I was sad. Again.

Now. I don't know about the rest of you. But I know if I were Carly. Not being involved. Not having anyone really give a hoot whether or not you're involved in the "fun" stuff at school. I would act oddly too. Sometimes, I think they forget that Carly is a child. She has feelings. Feelings that get hurt, just like every other kid in that school. Carly just cant always vocalize her feelings. That makes me sad too.

Paul and I have talked a great deal about this. We have decided to pull Carly out of full day school and place her back on a reduced schedule. I don't want to do this. It pisses me off to have to do this. But, I've seen with my own eyes. My daughter is very sad. It's gut wrenching. And honestly, what's the point of her being there every afternoon? It's recess time and all of their specials. She doesn't get called on. She doesn't get attention, encouragement or does she receive praise. Her gen ed teacher gives out stickers everyday. Carly NEVER gets one. NEVER??!! This teacher also gives out small certificates when a child does 'top notch'. The year is almost over, Carly has received one. ONE. It was for coming in from recess at the first whistle. That was back at the beginning of the year.

Today, Carly is at home. She woke up dry heaving at 5am. Within 45 minutes, she was throwing up. It was short lived and she was back to sleep by 7. She seems fine now.

We see such a different kid than the school sees. Carly is happy, playful, OUTSIDE, enthused about doing her workbooks. (for hours!) My gut tells me, there is a deep problem. One being, I don't think the teacher ever took time to try to connect with Carly. She pretty much is nonexistent in her gen ed classroom. I've seen this with my own two eyes too! Thank God for the kids in Carly's class. They look out for her. They are concerned for her. They LOVE her. They all want to sit with her. They all want to play with her. They all want to walk with her in that hall. They all want to help her with her work. But, the teacher and the aide fall short.

It makes me sad. How does one stop being so sad?

Being left out.

We've experienced this in the past, but just because we have, doesn't make easier this time around. Being left out is not fair. It's not nice. In fact, I believe it's down right mean.

Last week, Carly was on Spring break. She came home from school on Thursday April 1. Break started on April 2. I opened her backpack and pulled out her take home folder. As I was going through her papers, I came across the teachers bulletin. This bulletin includes information of what has been going on in class. What is going on. What will be going on and so on and so forth. Well...this particular bulletin included a picture of the kids in Carly's classroom. Except, I looked and looked and didn't find Carly. She was not in the picture. :o(

Why? Why leave a student out of something the whole class is included in? Why? I have no idea. The more I've thought about it, the more upset I get. Sad, upset..not mad, upset.

The theme of the picture was country week. Each elementary class had a country. They were doing the "Reading Olympics" for the month of March. Being it was the "Olympics", they had closing ceremonies. This pic was of Carly's class with their flags of their country. All the kids were holding their flags and smiling sweetly. All the kids, except for Carly.

For the life of me, I can not understand why the picture was taken during the time of one of Carly's specials (speech, PT, OT). Did it have to be taken right then? Could they not have waited the 30 minutes during Carly's special to include her? Could it be, that the teacher really doesn't consider Carly as her student? I believe, even though it makes me cringe, that the teacher really doesn't pay much attention to Carly.

Now. Before I get comments from teachers backing teachers, let me say this. This particular teacher has, in the past informed parents of special needs kids, "that she is allowing their child in her classroom". Oh really??? Hmmm, I beg to differ. I've also seen first hand the way this teacher interacts with Carly, or shall I say, I've seen her "lack" of interaction with Carly. It really does make me very sad. More so than mad.

Maybe that's why I've waited so long to blog about it. It just saddens me so.

I realize that my daughter was born with Down syndrome, but she still has feelings. Feelings that were very apparent just the other day when Carly sat looking at her classroom picture, but never found herself. It broke my heart. Being left out is no fun for anyone. Especially kids.

We are trying to grow a thicker skin. As so many people tell me we need to do. However, these types of things do make me so sad. I see my daughter being left out of something controlled by a teacher. To me, there is no excuse. This teacher or any teacher, has the responsibility to help bridge any gap or doubts the other children in the class may be having toward a child with special needs. Not just Carly, but any child. What kind of example does that set for the other students? Even though the students all LOVE Carly.

So before anyone feels the need to comment on this post, defending the teacher. There is no reason at all that Carly was left out. She hasn't been absent from school in over 3 weeks. And no one can tell me, that this picture couldn't have waited until Carly was back in her classroom.

The fact of the matter is. Carly was left out. And sadly, this will not be the last time.

Why does it bother me??

Paul and I had Carly's conference at school last night. All in all, it went pretty well. We learned, on the academic end, Carly is progressing nicely. For her anyway. She is getting more vocal..which is GREAT! She is showing pre-reading skills and that's great too! She is getting numbers and working very hard to grasp the math concepts. We are all thrilled that she is more vocal. That she can write numbers and letters. That she can spell/write her name. That she knows all of her colors and shapes. That she is beginning to read. She can do word searches for crying out loud! Not bad when put to parents in those terms.

Socially, Carly is blossoming. She is quite popular. All the girls in her classroom want to be her friend. Everyone wants their turn to sit with Carly during story time. Stand in line next to Carly. Sit at the lunch table, next to Carly. Anything Carly does, a steady stream of girls want to be there with her. The girls and boys, take great pride in any accomplishment that they see Carly master. The teacher told us, "they are Carly's cheerleaders". That makes us smile!!

But,,,,,there seems to always be a, but! Funny how that works isn't it? The teacher and resource teacher, (who Carly sees every day for 30 minute sessions) had to do it. I understand that. It just doesn't make it any easier to hear. They had to tell us, Carly is very behind her peers in terms of learning. Yes...she is progressing, but it's at her rate. Not at the rate of the class. Okay, so honestly, Paul and I know that. But, like I said, it doesn't make it any easier to hear. It kind of feels like a kick in the gut. Not a big ole kick in the gut, but a kick in the gut, nonetheless! However,we are thrilled with what she is doing. So is her resource teacher.

Don't get me wrong. I'm not at all upset with how conferences went. Not too much. What I mean is, they didn't tell us anything that we didn't already know. It's just hard to hear. As parents, we want what every parent wants. Their kid to thrive. To learn along side their peers. To gain independence. We understand that it will take Carly longer to get there, than say...her peers. But we have confidence that she will get there. How far she will go with her ability to learn is any one's guess. Of course we hope she continues on with her learning for many years to come. And from what I've read online recently..it's very possible that our kiddo's with Down syndrome continue to learn way into adulthood. Many educators feel that our kids will get to a point, where they maxed out their learning ability. So to speak.

At the end of the conference, I told the teacher's that we feel that any progress Carly makes in school, is HUGE. Even if it's a small accomplishment in the eye's of the educators...it's HUGE for Carly. And we're going to take whatever we get, and be proud of her! To that, they agreed!

Just wish I knew, why does it bother me?

After conferences, we headed down to the Girl Scout cookie stand. I've thought about signing Carly up for the Girl Scout's, but honestly I thought she would be too shy. And, up until this year, I believe that would have been the case. I guess I'd better start to think about it for next year. Hopefully, she will be even more vocal and more social. Anyway, we purchased 5 boxes of cookies. Oh my gosh...are they good!

Then we hit up the Book Fair that was going on in the library. Have I ever mentioned how much Carly LOVES books? She walks into a library and her eyes get as big as saucers. She is on cloud nine! We ended up buying her 4 books, a pencil...that she just had to have, and an eraser too. She thinks writing and erasing is just the coolest thing ever!

As we were getting ready to head home, we popped into the gym teachers office. I was curious as to how Carly was doing in gym class. At the beginning of the year, she was very shy in gym. She would stand back and observe the kids, rather than join in. Not anymore. This gym teacher video tapes bits and pieces of each child doing "their thing" in gym. He then loads them onto his computer, making it possible to share a little bit of gym class with the parents. So cool! Sadly, he only started doing this 3 months ago. We watched 2 clips of Carly in gym. The first clip was taken 3 months ago. The clip showed just how leery Carly was. She would take part, but was very hesitant. The second clip was taken last week. Holy Cow, what a difference in Miss Carly. She was involved. Focused. Having fun. Doing the activity for that day, which was under hand throwing. The gym teacher was very pleased with her progress. Although, he did admit...Carly does great as long as he keeps his distance! Apparently, Carly prefers the gym aide, over the gym teacher! After spring break, they will start doing over hand throwing. The gym teacher is excited for that session to start up because he has already seen Carly throw over hand. He thinks she has quite the arm on her!

In a nut shell. Conferences went okay. It's just so hard to hear what your child cant do. I hate that she has to be compared to her peers, but that's how the public school system works. That's how mainstreaming our kids works. And some how, I need to grow a little thicker skin. That way, maybe I can stop wondering, why it bothers me so.

Daddy Daughter Dance 2010

Saturday night was big night for Carly and her daddy.

It was the Daddy Daughter Dance at the school.
Striking a pose, before heading off to the dance!

This little girl LOVES her daddy!

Just another pose for the heck of it!

They came home about 15 minutes early.
Paul said Carly kept asking for "momma"!
I would have loved to have gone.
Or been a fly on the wall.
Something!

I guess she had fun. That's what she told me.

Paul says she's quite popular. Several little girls were running up
to her all night. They were trying awful hard to get her out on the
dance floor with them. Carly wasn't having it though.
Eventually,
Paul did finally get her to dance a couple of times.

She seems to be overwhelmed, right at first, with big gatherings.
She does eventually 'warm up' and then she enjoys herself.

None-the-less, she missed her "momma"... Even though she LOVES
her daddy so much.

Report Card.

Oh how I dread report cards. Carly came home with hers last week. Ugh... Okay, so it wasn't really bad, but it does show me just how far behind she is. I swear she has regressed this year. Not sure if this is all to overwhelming for her or what the problem is. Carly loves school. She loves to learn. Matter of fact, she plays school at home, all the time.

One area of regression that we have seen, is the printing of her name. She was just about to master her name (first name) a few months back. Now, it's barely legible. I think it has to do with the school trying to teach her how to spell her last name. I know she needs to learn how to spell her first and last name, but can't we wait until she has a solid, concrete, legible printing for her first name?

On the other hand, we have seen Carly start to pick on the basic concepts of reading. Which is super! She recognizes words. She doesn't always print the letters to words, but at school the teacher gave her a magnetic board with magnetic ABC's, and she spells many of her spelling words on that board. HUGE! Another thing that we've seen, is her ability to do a simple word searches. Blows my mind that she is able to do that. It pleases the teacher too. These are all signs that this little girl will soon be reading.

Then, we have math. She is a little confused with that. And, according to the teacher...puts her math away before she's done. She tells the teacher, "no, all done". However, she recognizes numbers 1-10, grasps their concepts in the math world, and is able to write them fairly well. The teacher says that when they have math projects, Carly gets very interested, but otherwise, she would just as soon have nothing to do with it.

I guess the biggest obstacle in Carly's way right now, is her speech. Yes, her speech is exploding. She has added several new words. Puts words together to form sentences (small sentences). And has oodles of approximations that she didn't have at the beginning of the year. Still...it's hard for her to communicate with her peers and her teacher. Although, everyone is pleased that she continues to advance in speech.

As far as behavior. Carly is very well behaved. She follows directions. Does as she's told (except when it comes to math). She pays attention. And from what I've been told, is much better behaved than many of the typical children in her classroom.

In comes the report card. Did I say how I dread report cards? It's just a confirmation that, yes..my kid is way behind her peers. No matter how many positives I can come up with, the report card says it all.

OUCH!

Today, at 3:15 I went out to Carly off the bus. She was all bundled up. Looked pretty much like she did when I sent her on her way this morning. We headed to the house. We fought the dog...who thinks he's human and just can not stand this very cold weather we're having. After winning the battle with the dog, we proceeded to get Carly's layers, upon layers of clothing off of her. She headed to the living room to watch her new favorite TV show. The Wizard's of Waverly Place. All the while, telling me she was hungry. I headed to the kitchen with her back back.

After getting her squared away with her homemade veggie soup ~ that I had just made this afternoon. I went back to the kitchen to go through her backpack. Each day, (only since Jan 1) the school/teacher has been sending me a binder home in Carly's backpack. I'm told what has taken place throughout the day. What goals, if any were met. I also see comments from the other staff who work with Carly. Such as SLP, OT, PT and the resource teacher. It's proven to be quite helpful. So happy they started doing this. Anyway, I opened the binder up today and found this:

"Carly fell on the playground today. She was playing with a few other girls and got bumped. She got right back up and continued to play as if she wasn't hurt. When she was back in the classroom, we noticed a scrape on her chin. She said it didn't hurt, but we still had her put an ice pack on it."

"(Carly was on the blacktop where it was clear)"

Okay, so. This is EXACTLY what I told the school would happen if Carly were outside during winter time recesses. She has such poor balance. Coupled with winter clothing; snow pants, snow boots, bulky coat, mittens, scarves and hats.... the poor kid can't walk very well through snow. She does try. Makes me a nervous wreck, but she tries. And that's important. The problem is, her balance issues. She knows she needs to be careful of the other kids. They make her nervous. They tear around like wildcats! I have no doubt that this was nothing but an accident, but it's one that I told them would happen if she were outside during winter recess.

Now...the school says that she didn't cry. Weeeeellllllllll, not sure I believe that one. These pic's don't do this chin any justice. Trust me. It's nasty looking. And She told me it hurt. I know it hurts her, because she keeps rubbing it.

I'm not going to make a big huge deal over this. Even thought it ticked me off that she was outside all bundled up..when her IEP clearly states otherwise. (during winter time) Although, I did write a note back to let them know that we may need to re-evaluate her recess time during the winter months. I did that merely to remind them..that they had better pull out her IEP and read up on it!

Another thing that I'm concerned over is the fact that these kids are outside playing on the playground with wind chills of 12. It was bitter cold here today. Tomorrow is suppose to be much colder. It's so cold, our dog can't even deal with it. Note those pink cheeks...likely wind burn. Ugh!

**Please don't look at her dirty face. I really notice it in these pic's. She comes home from school looking like a rag-a-muffin most days. :o(

Sharing the Turkey song & our Turkey day menu.

We've been singing this song with Carly all week. A song she learned at school during music class. Well, maybe I should say that I do the singing. Carly watches with wonder as she signs much of the song.

Five Little Turkeys

5 little turkeys standing by door,
One waddled off, and then there were 4.
4 little turkeys under a tree,
One waddled off , and then there were 3.
3 little turkeys with nothing to do,
One waddled off, and then there were 2.
2 little turkeys in the noon day sun,
One waddled off, and then there was 1.
One little turkey better run away,
For soon will come Thanksgiving day.

This song brings back many memories. Ashleigh and Brad sang it when they were in elementary school too. As a matter of fact, the music teacher they had, is the very same one that Carly has today.

I'm already hungry for dinner tomorrow. Here's our menu:

Nice big fat turkey.

Mashed potatoes

Stuffing

Gravy

Broccoli

Candied carrots

Cranberry relish

Deviled eggs

Jell-O salad

Rolls

Pumpkin pie

Pecan pie

Apple pie

Brownies (Brad dislikes pie)

Mmmmm..... I can't wait!

School picture & stuff.

Carly had her pictures done for 1rst grade a few weeks ago. We finally got them back and much to my surprise, she had a smile on her cute little face! It's the very first school pic that she has ever smiled in. I'm not too sure what the heck she is looking at out of the corner of her eyes. No doubt, it's someone trying to get a smile out of her!


Sorry it's so grainy. I scanned it into my picture file and of course it didn't turn out as bright & crisp as the original. But you get the just of it. :o)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I heard back from UofM. We are to follow up in February. Not sure what 'follow up' means. It could mean an appointment or just a blood draw. I'll have to call our NP to double check that.

As I was telling Paul tonight about the three month follow up for blood work (or whatever). Carly quickly pulled her shirt sleeve up to show Paul where her Wednesday labs were drawn from. She then went on to tell us that next time she wants the other arm done. After that, she let us know that she wants McDonald's after her lab work. Guess she needs something to look forward to. Silly girl.

Happy Friday all!

No success. Pushing forward.

Trying to wake up this chilly Tuesday morning. I must admit, it's not easy to wake up after not sleeping well the night before. I've seem to have lost some much needed sleep due to worries regarding Carly attending our local school district. Quite honestly. I'm tired of the whole thing. Sadly, Carly is only in the first grade so this is likely to continue for quite sometime. It just plain sucks!

Monday, mom and I, along with an advocate headed in to the school for the continuation of Carly's IEP meeting. It lasted 2 1/2 extremely long hours. Some issues were resolved. Others were not. The main issue being Carly's signing. We had no success with that issue. The school flat out refused to get an ASL certified Para Pro. In fact, when they were asked, point blank whether or not they would hire someone for Carly, they answered flat out, "no"! Our next step is to present a request in writing for the signing Para, to the school district. Then, we head to the lawyer and plan to go into Due Process. Did I mention how much this sucks?

We have been in contact with the Dept of Education in Washington DC. We were told that the school district must provide this special type of Para Pro (signing) for Carly in order for Carly to receive an appropriate education. Which in turn, falls into F.A.P.E. Why on earth the school is refusing is beyond me. Heading into Due Process with cost the school some big bucks. They will indeed have their lawyers there. Lawyers that are extremely costly to the school district. Money that could be spent on my daughter's education. However, our attempts to work with the school and convince them that Carly does in fact need someone to help her to strive and be successful at school, has failed.

Many things were addressed during the meeting. One of which; I questioned why is Carly being put in time outs. Why I hadn't been informed of this (my mom busted them in action). Why they were now requesting that we give them several days notice and not to just pop in to check on Carly during school hours. The teacher turned her chair toward me and said, "how do you suggest we handle Carly?" Um...WHAT????? Everyone had just said that Carly was laid back and easy going, non disruptive, no problems with behavior whatsoever. After I pointed out the fact that the teacher was placing Carly in time outs, (which take place out of the classroom, down a hallway and on a bench), with no reason other than no one wanting to take a little extra time to help Carly along. The tune was quickly changed. The teacher then said, "well we do that so Carly can refocus". And she said, "we do that with all the kids from time to time". Her examples of time outs for other kids did not involve a bench at the end of a hallway. Those kids get to run errands for the teacher. They get to go down to the office and help make copies for the class. That's how they get punished for not being focused. How is that fair to my daughter? It's not!

During yesterdays meeting, my heart was broken by a particular comment that Carly's first grade teacher said to me/us. First, let me explain a little bit about the IEP. An IEP is a meeting with the 'team' who work with your child at school. It's a plan of goals that are set up for your kid. A plan that the school must, by law, follow. During IEP's, the 'team', which is made up of any one person who works with your child toward their education. Such as; physical therapist, occupational therapist, speech & language, spec., ed director, principal, aid, teacher and resource teacher, etc... At each meeting, each person talks of the child. Telling how the child is doing, as far as reaching goals that are set in place during each IEP. When it came time for the teacher to start her spiel. She started out by saying that she had parents come to her regarding their children and the interaction taking place with Carly. Imagine how my heart broke at that point. She also said that the parents feel their kids are having a burden placed upon them, by helping to assist Carly with various things. Such as; working with her as a buddy. The teacher went on and on and then she wrapped it up and it went something like this: "Well, I think Carly needs to be in a smaller group setting." She rambled on a bit more, but she completely lost everyone. Everyone, except for me. I knew exactly where she was heading. She went on to say, "Carly would really benefit more with one on one time and I just don't have the time to give her one on one attention." This remark really was a slap in the face. She then said, "I do have 17 other children in my class." The spec. ed director still wasn't sure what the heck the teacher was talking about and she then questioned her. The teacher went on to say that she thought Carly should be in the resource room for a good part of the day. Well....much to my surprise, the Spec Ed Dir., spoke up on Carly's behalf and said, "no, that is not what Carly needs. Not at this time ". After that, the teacher walked out of the meeting. Unfreaking-believable, don't you think?

And so, I came home an absolute wreck. 1, because they refuse to get my daughter the help she needs in order to be successful. 2, the teacher telling me the thoughts of the other parents. 3, the teacher stating that she doesn't want Carly in her classroom. Wow..talk about being slapped in the face. No wonder I didn't get any sleep last night.

For the life of me, I don't get this whole denying Carly a signing Para pro. Good Lord. This little girl signs ALL THE TIME! She has a list of signs that is way over 500. Which by the way, she has taught herself over a course of the last 2 years. Her spoken words are around 70+. Can they not see the best way for Carly to thrive in school? Obviously, they can not. Therefore, we are pushing forward.

I think I'll go take a much needed nap. Have a good day!

IEP meeting, and updates.

So, today we had Carly's IEP. Nothing but a BIG waste of time. We have to continue the IEP next week. Not something I'm looking forward to at all. Nothing was accomplished in a 2 hour meeting. The only thing the 'team' wants to do is argue with me. I'm sooo very sick of this.

As for the legal part of it. I did have an attorney present at the meeting. I do feel this will likely go into a hearing. All because the stupid school will not meet Carly's needs.

I do have several other issues with the school that a judge would really frown upon. However, I don't want to get into too much of it right now. Lets just say, this school has stepped WAY over the line on many issues regarding Carly.

We could use a few prayers in the up and coming weeks. Prayers that all goes smoothly and we can avoid any court proceedings. But, like I said, I do feel we are headed to a hearing.

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Carly is still home from school. We pulled her out due to the confirmation of Swine flu at her school. She did get the shot on the 24th. However, it takes 14 days to start to do it's job. Hopefully, she will be back to school on the 10th.

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Update on Sarah, my aunt's niece. Her whole ordeal started on Oct 15. She is still in ICU. Still on the ventilator. She ran a temp of 104.8 (under arm temp) for one solid week. It is down now to 102.6. Sarah is still very critical. It doesn't look good for her. Please keep Sarah and her family in your prayers. She just turned 30, while in ICU.

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Family issues, other than Carly. My mom is having some health issues. It looks as if she is in kidney failure. To what extent? We don't yet know. For what reason? We don't yet know. She has an appt with a specialist and will be having an ultra sound to determine just how much failure she has. Also, to see if it's one or both kidneys. Last week she met with the same specialist and went over some test results that were done previously. He did confirm all of the tests point to kidney failure.

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My nerves are frazzled right now. Let's see, I have the school issues going on. I have my mother's health issues to worry about. Oh, and Carly has up and coming Cardiology and Oncology appt's on Nov 12. She will be having an Echo and the whole work up. I hate those
Echo's. They scare the crap out of me. I'm always such a wreck and just know they are going to tell me bad news. Then of course, there's Oncology. 'Nuff said!

Guess that's about it, plus my battery on my laptop is dying.

My hand was forced..

We will be seeking legal representation for Carly's rights.

I'm so very sad that my hand was forced. It shouldn't have to be this way. Hard. Complicated. A mess. It breaks my heart into a million little pieces to have to go this route. But, my heart breaks each time I think that Carly is not being treated fairly. Not being educated to a level that is appropriate for her. My poor little girl. She is so very bright. So very able. So very eager. So full of potential. Learning is what she loves to do. Every day. All day. She works so hard at every task she takes on. She does her very best at all she does.

Today's decision comes from another observation done by my mom. Mom and I are taking turns each day for the next couple of weeks...or how ever long need be, observing Carly at her school. Today, mom observed Carly during speech. Mom reports that it went quite well. Carly did a good job. Said words that she was suppose to say. Did all of her sounds. But, was stumped by some flash cards. These flash cards were action type. Such as throwing a ball, running, walking..and so on. Carly did several correctly and suddenly hesitated. The card that threw her was "walking". So, the speech teacher took both of Carly's hands and had her tap her fingers along the table, in a back and forth pattern. While doing so, she told Carly, "walk, Carly walk".

After the session, the speech teacher asked my mom how she thought things went. Mom told her good. But, she also told her that if she would have used the sign for walk, a light bulb would have gone off in Carly's head. Carly would have made that connection. The speech teacher said, "I will not use signs with Carly" and "I'm here to get words out of her mouth and that's it". I was floored and so was my mom.

After the speech session Carly was returned to class. Mom walked down to the classroom and watched from the door window. Neither the teacher or the aide new mom was watching. Carly was suppose to be working on some sort of activity. Well, likely she didn't understand it. I don't doubt that. However, if someone would take the time to walk her through it...she would get it. I have no doubt about that. The solution; give her a 'time out'. The aide said, (mom could hear this as the door was partially open) "well Carly, we're going to the bench". So yes, they put my little girl in time out simply because she didn't understand what she was suppose to be doing. Carly was not acting out. She was not disruptive to others. So, why on earth put her in time out?

Paul just called me from work. We talked quite a while about this. He's very upset too. Ashleigh called soon after. She is FUMING MAD. Ashleigh is working at a center for disabled adults. She is floored by the way the school is treating Carly. She is just as pissed and heart broken as I'm. Her words were, "mom, get a lawyer". So, that's exactly what we are going to do.

I told Paul earlier, I'm the one who has always saved Carly. I've walked side by side with her through each of her battles to live. I watcher her die three different times. Yes. 3 times I watched my daughter die. Flat line. Die. I've always been there to comfort her. Always. I'm the one who would save her. Me. Mom. It kills me to know that Carly must feel like I've abandoned her. Sending her to school where they are not doing right by her.

So, the school has forced my hand. No more will they mistreat my daughter. Punish her for doing NOTHING wrong. No more, will they fail to provide an appropriate education. Deny her first language..signing. I will not allow them to ruin my daughters self esteem. I will not allow them to cause my very mild mannered daughter to develop behavioral issues. This is going to stop. They will do this no more. NO MORE!

Sorry for the ranting. One day soon I hope to have pictures and happiness to share with you all. But for now, I'm pissed. I'm sad. I'm ANGRY!

Why does it have to be so difficult?

Why does it have to be so difficult to work with the school regarding Carly and her education? I really hate that it's so difficult. It really shouldn't be. Except that they think, they know, my daughter better than me. Just because they have read articles about some kids with Down syndrome. They believe that holds truth to all children with Down syndrome.

The problem?? Well, Carly uses ASL signs as her main form of communication. Yes. She does talk some. She is adding more and more words to her vocabulary every day. She knows her ABC's. She knows her colors. She knows all of her shapes. She can write her name. She can write the alphabet. She is beginning to spell words. She can even recognize words that I spell out loud to her dad. So she won't know what were talking about. For example: Carly really dislikes it when it rains. I spelled r a i n to Paul the other night because we had a chance of rain in the forecast. Carly heard me and yelled, "NO" and then went on to sign "sunshine".

All I want the school to do is learn some signs. NO ONE knows signs at that d@%* school. Not one single person. How is Carly suppose to learn when know one can understand her??? She is getting frustrated and actually very bored. She is even falling asleep in class. Which is so not like her.

Last week we had a meeting with Carly's 'team' of educators. We got nowhere fast. The principal suggested putting Carly on a reduced schedule to see how she does. We decided we would try that for only a couple of weeks. Well, Miss Carly is thrilled to be coming home. She is happy and playing. She is writing, coloring and doing her puzzles all afternoon. Oh, and she is taking NO naps while at home. She hasn't fallen asleep one single time since we started this last Wednesday. That tells me. My poor daughter is so very bored at school.

The school will not address my questions regarding them learning signs. They completely ignore that issue and turn the conversation quickly onto another subject. I've even provided them with resources regarding ASL signs. Still, they ignore me.

Today I got in touch with a local advocate group. I was told to fight tooth and nail to get an interpreter in the school. I was told that one should have already been in place. Without one, Carly is not getting the appropriate education (per F.A.P.E) that she is entitled to. I was also told to fight to revamp Carly's curriculum to her needs. So far, they have not done this. Again, Carly is not getting the appropriate education that she is entitled to.

As much as I hate having to get nasty with other people. It's time to get down and dirty. I hate that the school is forcing my hand at this. I really don't like it when I have to get nasty. However, I can and I will. I've had to do with doctors many times over, so I'm not really afraid to. I just really hate that it comes down to this. I will now be labeled "that mother" in the eyes of the 'educators'. Albeit, the advocate group put it best, "Carly is regressing". In fact, the advocate group said they were surprised that Carly isn't having behavioral issues as a result of being neglected/cheated out of learning at school.

This is why I went to that d@%* school back in the spring. I wanted to make sure that moving Carly on to first grade was the right move. I was assured that it was. Well. Doesn't look to me that it was the right move. Not if they aren't willing to meet Carly's needs. Needs that will likely need to be altered throughout her school years. I realize that Carly may not be able to keep up academically with her peers, but she is very capable of learning. She has proved that a million times over.

As for the reduced schedule. I will be putting a stop to that. It has bothered me from the first day of the trial. Carly is missing all of her xtra's. Such as ~ gym class, music and art and recess. Those are huge areas for social growth. Carly needs that so much.

Sure wish I knew why it has to be so difficult.

First Day of School.

Finally first day of school pictures. Not many though. Carly was in no mood for pictures in the morning. The little stinker! She was quite happy when she got home. I'm sure you can tell which picture is the one taken after school! She is saying, "cheese" in it.

So far so good with school. She is happily going in the morning now. We started putting her on the bus on Wed. She LOVES the bus. She only has a 10 minute ride to school each day. And, there is only one other child on the bus route. However, she does have a bit longer ride home. She is the last one on in the morning and the last one off in the afternoon. She has about a 20 minute, give or take, ride home so that isn't too bad. Like I said, she loves the bus, so that's okay.

I'm learning all about Picasa 3. So forgive me while I play around with collages! As always, you can click on the collage to make the pictures larger.

Back in the swing of things.

Today is Carly's first day of school. She was not the least bit interested in going today. In fact, she told me she was staying home.

I woke up at 6:10 this morning. Rolled out of bed and headed to the shower. I had planned on getting Carly up at 6:30, but she woke up looking for me and crying. She strolled into the bathroom and sat patiently waiting for me to finish up my shower. She then decided she was hungry. After my shower, we headed to the kitchen and made her a fried egg sandwich. She refuses to eat eggs any other way. She ate every bit of it and had a glass of juice too.

Eventually, it was time to get dressed, brush teeth, go potty one last time, fix hair (never fun) and head out the door. Oh....I forgot to mention. It was raining outside. Carly really hates the rain. Luckily, it had broken to only a slight sprinkle by the time we had to head out. That made it a little easier to get her out of the door.

Off to school we go. Carly was happy as can be. Only because I had the radio blaring away. She danced and sang and was finally happy.

We arrived at school....and she wasn't happy any longer. She fought me tooth and nail getting out of the van. Finally, she caved. We headed in to her classroom. Found her seat and tried and tried to get her to smile for the camera. Shoot. I tried and tried to get her to just look at the camera. She wasn't about to. I'll try to snap a few pictures when I pick her up today.

I'm sure she'll be okay today. Probably she'll do better than me! First grade is so much more structured than kindergarten. That may prove to be a great thing for Carly. Carly isn't a kid who is big on change. She likes things to go along just so.

Tomorrow Carly will be riding the bus. She loves the bus. I'm selfish and wanted to take her her first day. The bus will be picking her up around 7:45 each morning. Which is the time we have to leave our house to get her to school, if I take her. We only live about 10 minutes from the school, so the route wont be too long for her.

As the day goes by I will get to cleaning my house...which may just stay clean a bit longer each day. ;o) Carly will get used to having a routine at school. She'll get used to playing with her friends again. And likely, we will be doing homework. Ahhh, back into the swing of things.

***I'll be posting a few pictures of Carly's first day of First grade later tonight. I'm hoping I can get a good picture of her after school today. I did snap a few this morning, but she was in no mood for the camera.***