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.

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.

The Graduate!

Finally...she is DONE with college! ! ! However, she informed us that she is likely going to go on to Grad School....Let's hope she lands a job that will pay for Grad School!

These are pictures that my mom took with her camera. I just realized that! I was too busy wiping tears from my eyes to snap pics after graduation.

Very happy gal in the above picture!

Mom snapped a couple of pic's after we had our celebratory dinner in downtown K'zoo. It was freezing outside.

I have several more pictures. Although, I haven't had much time to mess with them. It's getting busy, busy, busy around here. As Christmas is vastly approaching!

At any rate, I just wanted to share some of our excitement with you all!
Happy Monday everyone! I'm off to the store to purchase food for Christmas dinner.

Time is getting near.

This young lady will soon be graduating from Western Michigan University. Majoring in Interdisciplinary Health with a Minor in Community Health. This is very hard for me to wrap my brain around. It seems like just yesterday our first born was heading off to her first day of Kindergarten. Now, in less than a month she will be a College Grad. WoW!

Ashleigh is finishing up her internship at Kalamazoo's Center for Disabled Adults. She absolutely LOVES what she is doing. She as accepted a job with this center working directly with 2 disabled adults who both have cerebral palsy. Her supervisor told her, "Ashleigh you could be running the joint before too long". Both of these young people are the same age as Ashleigh (soon to turn 23). Ashleigh will be doing home services for both. She will start her job soon after the first of the year.

Last week Ashleigh told me that she thinks she wants to continue on for a nursing degree. That was her original career choice, but Western and their waiting list was just to far off. She could have gotten into the nursing program next term or as her advisor said for sure the following term. She opted out. Not wanting to hang around a couple of more terms. Spending more $ on college. Now, she is thinking that's just what she may want to do after all. We shall see. However, she will not be attending WMU for this. She is thinking of UofM or MSU. They both have accelerated nursing programs. The only prereq is, a 4 year degree. Time will tell.

I opened up the mail yesterday. This is what I found:

Imagine the chills up and down my spine when I opened this. It's truly unbelievable to us that our first born will soon be venturing out into the world with a degree in hand. Seeking a good paying job. Knowing that this degree may take her somewhere far from home. Although she tells us that we have to come with her. She wants us near when she starts a family. She doesn't even have a significant other. Yet! Plus, she doesn't really want to leave Carly. That's probably the whole reason she would want old ma and pa around!

The month of December will be a busy one for Miss Ashleigh. Her birthday is December 13. Graduation is December 19. Christmas of course on the 25th. I just realized. This December is going to be quite costly for old ma and pa!!! ;o)

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!

School = Headaches.

This morning I dragged Carly out of bed...she would have rather stayed in her bed under the covers, where it was warm and cozy. Who could blame her? It's a chilly Monday morning after all.

Much to the schools dismay, Carly will be starting back full days today. I had to finally put my foot down and tell them that this is my decision, not theirs. I haven't felt good about these partial days ever since we started them on Sept 23. I've felt Carly is missing out on learning, socialization (which is very important) and all of her specials (gym, music, art). To me, that just doesn't seem right. It seems to me as if she is being cheated out of her education. One that she is entitled to.

Last Thursday I ticked off the Special Ed Director. Too bad, is what I have to say. I spoke my mind. Well, actually I emailed her because I could NOT get her attention. I sent a copy of that email to the Principal too. So of course they called me in for a meeting. What they didn't know was, I was bringing my mom as a witness to the meeting. I've learned, NEVER go alone to a meeting at the school regarding your child. Never. EVER.

At the meeting, the very first thing that took place was...the Spec Ed Dir jumping all over me. Scolding me like a child for speaking my mind. I was told I insulted the speech teacher in the email that I sent. I did no such thing. What I did do, and I pointed this out to the principal & special ed director, was quote the speech teacher. Word for word quotes. The quotes are all negativity toward Carly. Negativity that I have heard from this speech teacher since Carly started going to school here in Kindergarten. The only words this speech teacher says to describe Carly are, "isn't", "can't", "doesn't", "not", "won't"...I think you get the picture here. Quite honestly, I've had enough of her negativity.

Let me tell you a little about this speech teacher. She was brought in out of retirement to work at our school. She used to work at a hospital rehab center for kids. She is older. Very unpleasant. Grumpy may best describe her. She is not open to signing, which Carly does 90% of the time. She tells me that signing does not lead to any speech. She tells me signing isn't recognized as a second language. I feel as if she is afraid of signing. She is set in her ways of 'old time teaching'. Fine for some. But it's not going to work for my kid.

Back to the meeting. I did NOT sit back and let this Special Ed Dir continue on with her scolding. I spoke to her firmly. Told her I was Carly's advocate and I would speak my mind any time that I see fit. I gave it right back to her. She isn't going to come at me with both barrels loaded and not get it right back in return.

Since Thursdays meeting, I've been researching, with a fine tooth comb, Wrights Law among other laws regarding schools and special need students. I'm sure the Spec Ed Dir knows these laws as well. I don't like to read that you basically need to kiss the team of educators, butts. I have tried and tried to communicate in a civil manner with the 'team', but that gets me no where fast. If you want to get the attention of the 'team' you have to get nasty and defensive. Sad, but so true. I had to point out things that the speech teacher was saying just to get a sure fire meeting. It worked. I got the meeting. It was worth it, even if I did get scolded like a child. Which by the way, I made clear that it will never happen again. The scolding I mean.

During the meeting, it was determined that Carly would go back to full days. The school was told that I will be (or my mom) observing Carly in her classroom, resource room and during speech. We will do this often. I don't think the school likes to be watched, but too bad. They are not doing right by my daughter and therefore, they need to be watched.

The school continues to drag their feet with getting an interpreter for Carly. One that is needed. Seriously, how can they know what Carly is capable of, if no one in that school signs???? Carly has no problem understanding what people are saying. The interpreter is for the school to know just what Carly is signing/talking about. How can Carly participate in any type of classroom discussion if they don't have a clue about signs? ? She can't.

All of this frustration with the school has caused me to have some massive migraines the last few days. I'm tired of the fight. A battle that should not have to take place. All due to the fact that I have a daughter who was born with Down syndrome. A daughter that deserves and is entitled to an education just like everyone else. As the law clearly defines. A daughter who deserves to have her needs met while at school. A daughter who is eager to learn. Capable of learning. Sadly, I know this is only the beginning of our battle regarding Carly and her education.

It breaks my heart every day when I send her to school. I know that she gets frustrated not being able to talk like her classmates do. Let's face it. Carly is different in many ways from her peers. Even though I use the phrase "More alike than different" quite often. The reality is, she is different. And I know that Carly knows she is different from her classmates. She knows she has limitations, even in the way she plays on the playground. The kids know that Carly is different than they are, but thankfully, I believe they realize that she is more like them than she is different. They see that she requires assistance in areas that they don't. However, the kids see that Carly likes to color, just as they do. They see that she likes story time, just as they do. They see that she likes to play on the playground, just like they do. She writes her name and is beginning to write words...just like they do. If it's so easy for the kids to look beyond the differences, and see that Carly fits in and that she is capable...why is it so hard for the school to see it??

I'm just not convinced that the school really wants Carly there. I've cried over this so many times. When the teacher found out that Carly was returning to full days she sent me a note. Mind you, these last four weeks of partial days, the teacher has sent me NO notes telling me about Carly and how she is doing. The note said "Carly is very tired during the afternoons". And "Carly kept asking for momma today". The real kick in the gut was when the bus driver brought Carly home that day. She went on to tell me that Carly's classroom aide brought her to the bus and informed the driver that "Mrs. R (teacher) doesn't think Carly is ready for full days". I can't get it out of my head that that's just the teacher not wanting Carly in her class. For whatever reason. Maybe she doesn't want to modify work. Maybe she doesn't want to slow the pace down for Carly. I don't know. I just can't wrap my brain around any of this crap.

My fear is that all of this negativity from the school will rub off on Carly. I fear that she will develop behavioral issues. Paul and I are trying not to talk about it in front of her. She is like a sponge. She takes everything in. If Carly does develop behavioral issues. I really do think I will blow my top. The school will then, likely wish they never heard the name Carly George.

Schools should not = headaches!

Monday.

We're back home. Ashleigh, Carly and I went with my parents to visit my brother and his family who live in Illinois, for the weekend. We got home last night. It was A quick trip, but it was a nice visit.

Now, I'm finishing up my laundry and trying to function with these stupid monthly cramps. Ugh! I really hate these darn cramps. They hurt like the dicken's. Plus, I always feel so awful. Yuck! I do take Motrin 800 and it does help quite a bit.

Last Thursday Carly went in for a physical with the pediatrician. She didn't need any shots, just the physical. I did take in a urine specimen to be checked. The school had called me on Thursday afternoon to tell me Carly had wet her pants. So unlike her. I knew she was going have a UTI. When I collected her specimen, Carly looked at it and said, "apple". She meant that it looked like apple juice :o) I was right. The doc ran the test. She is now on a 10 day course of antibiotics. She also has a viral thing going on causing a runny nose and cough. However, those both seem to be better today.

I've been trying to deal with the school again. Boy do I get worked up with those people. They want to do testing on Carly. It's called the Gazelle Test. I've been researching it and decided not to allow this test to be done, as of now. Being that Carly's main form of communication is sign, there is no way to accurately test her. Not until someone is hired who knows signs. I think they would be knocking points off of Carly's scores and that isn't fair. This little girl knows tons. Her receptive language skills are dead on for her age. But her darn speech takes points away from any testing. Especially if not one single person knows/understands the signed responses that Carly would likely give.

Other than that. We are trying to get back into the groove of things. Laundry, house work, menu plans, catching up on all the blogs I follow, etc......

Happy Monday All!

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.

Masterpiece.

We have really been working with Carly on spelling her name. First name only. For now anyway. She has been able to print random letters of the alphabet for a couple of years, but was no where near being interested in spelling her name. So, it has been practice, practice, practice for several solid months.

Carly always has a pencil, marker, crayon in her hand. I work with her often. Except that she does not like for me to watch her work. As a matter of fact, when it comes to writing her name, she flat out refuses to do so with me anywhere around.

The first time she wrote her name at home I didn't notice it right off the bat. I was in the kitchen, as I so often am! When she started hollering for me. She wanted me to see what she was writing on her pad of paper. She has several pads of paper ;o)

I went to see what she had done and at first failed to even see the HUGE accomplishment. Her name. I saw the X's and A and B right away. She acted really put out. Then I saw it. Her name. Holy Moly, I almost fainted. I did cry. No doubt Carly thought I was nuts! Then of course I made a huge deal over it. She was very, very proud of herself.

As you see, I snapped a picture. I wanted to email it to her kindergarten teacher. And to some family and friends...you know, to brag a bit! I just knew the teacher would be as excited as I was. So, I did just that. Emailed the picture to the teacher. The next day, the teacher emailed me back. Here are her words, "Oh Joany, Carly has been doing this for several weeks at school". Gosh darn it. I thought I was the first one to see her masterpiece. Not the case!

The date of the following masterpiece was 4/10/09. As you can see, Carly wrote her L upside down and had a bit of trouble with the Y, but anyone can clearly see, she wrote her name.


This next picture is much improved. It was written today, 8/3/09. Again, I was in the kitchen. Carly came out and asked for paper and a pencil. I gave her both and she went on her merry way.

Later in the day, we were cleaning up the mess she had made in the living room. I picked up the pad and almost fainted. She had found (Lord only knows where)a green crayola marker. Quite clearly, she wrote her name with it. I asked her, "Carly did you write your name today", her response was, "no, Paul" I said, "Carly daddy isn't home". She shrugged her shoulders, in true Carly fashion. She kept telling me no, Paul. So, I dropped it.

I then got to looking a bit closer at the paper she wrote on. I had jotted down some figures while paying bills. I noticed those figures were still on that very piece of paper where her name now appeared. She did write it today. The little stinker wouldn't own up.


We are all beyond thrilled with how very much improved her name writing skill is. She never ceases to amaze us. She is, without a doubt, our littlest masterpiece.

Field Trip.

Yesterday, Carly's school went on a field trip. It was a really cool place called Castaway Cafe. It's an inside play scape for kids and adults. Too bad Paul had to go to work. It's right up his alley!

At first, Carly was really excited. Then, as we headed off to play and climb and climb and climb some more. She froze with fear. Too many wild kids. They were everywhere. Running, jumping, climbing and screaming too. It was a total of 2 day cares and of course Carly's class of 21 kids. Wow!

We climbed to the top. Well, near the top. Carly loved walking across a bridge. She must have walked it 10 times. Back and forth. Back and forth. Then, she decided to venture off to one of the 4 slides. She chose the pink one first. Of course, she wanted me to go down it with her. We got situated and headed down the slide. Let me just say. HOLY COW! We were zippin' so fast down that slide. We got to the bottom and Carly said, "all done"! Then she trucked off to a chair to watch the craziness going on.



It was soon lunch time. Pizza to be exact. The teacher rounded all the kids up and they ate and ate and ate. Then headed back out. Well, everyone but Carly. She is the s l o w e s t eater ever! She did eat her entire piece of pizza though. That's rare for her. Some of those kids ate more pizza than my grown kids do at one setting. Like 5 and 6 pieces each. No one seemed to end up withtummy aches. I was sure there would be a few. Finally, we headed back out to play. Carly was much happier with a full belly - of one piece of pizza!

By the time we got back to playing. The 2 daycare centers had packed up and left for the day. Carly was much more at ease playing. We, played and played. Took a break and went back at it again. When it came time to leave, guess who didn't want to go?!? Yep, Carly. (I, on the other hand was EXHAUSTED from all the climbing) She kept telling me, "No" and "More, more, more." I told her we'd come back another day and bring daddy. Of course she said, "sissy & bubba". (Ashleigh and Brad), to that I said, we'll see. Although, I'm not sure they'd enjoy it at their age!





I wish she could have enjoyed it from the get go, but she knows her limitations. Her balance is quickly tested whenever rambunctious kids get to close to her. Carly is very much aware of her poor balance. Don't get me wrong, she can climb, run, jump....and so on. However, she knows if a kid accidentally bumps her, she will likely lose her balance and fall down. So, she steers clear of major romping of other kids.

Just before we had to load the bus, we headed back up the play scape. This time Carly wanted to go down a different slide. Well. Let me just say. HOLY, HOLY, HOLY COW! That one was faster than the first one we went down. Of course, she had to make me go down with her. Good thing. That slide tossed us both around! She would have freaked by herself.



All in all, it turned out to be a great time. Exhausting for me, but fun to see her having a good time.

Change of plans..

Oh I do hope this change will be much better for Carly. Some of you read our care page and may know that Carly will be attending summer school this year. We now have a change in plans as of this morning.

A couple months ago, I checked with our school district, just to see if there were any programs in our area, that Carly would qualify for. To extend her school year. My fear was, that she would regress during the summer. I was told that the only thing offered was a school for children with special needs. This school had severely disabled children. Much more so than Carly. However, that was our only option.

I had many concerns about sending Carly to this school. One was, I remember back to preschool. Carly's teacher was a special education major and told me that Carly did not need to and should not attend this particular school. That had me concerned. The other thing was the severity of the other children. I went to tour the school and saw several who I know would have really frightened Carly. However, I had resigned myself to the fact that this would be a good thing because they had the professionals there to work with Carly. Such as speech, OT and PT.

This morning my phone rang. It was the special ed director of our school district. She informed me that there was a change and she thought it was better suited for Carly. Our school has contracted with a pre-school/daycare in our home town. They will be bringing the kids that need the extended school year into the pre-school and actually do a summer school program. The school believes that Carly, and the other kids who need extended school year, should be around typical kids more so than severely disabled kids.

I do have one big concern with the change. There will be no one other than OT there to give any therapy. Oh, that's not true. There will be a para pro there to give Carly her speech therapy. I'm not to thrilled with that. The whole reason Carly even qualified for an extend school year is because of her speech. Am I wrong to want an actual speech therapist working with her?? Oh the challenges of having a child with special needs.

Our special ed director does think this will be better for Carly. They always point out to us just how "high functioning" Carly is. Also, "it's mainly her speech that labels her disable"! I really don't like the high functioning remarks. Not sure why, but it just bugs me. Hopefully, this summer school set up will be a better situation. Time will tell.

Oh, and my baby has her last day of kindergarten tomorrow....*sniff*