Wednesday, September 17, 2008

A Big Loaded Question

As I sit here contemplating the meeting yesterday (I will update that later, I just do not have the energy right now & I am still trying to figure out what to do), I can't help but wonder...

Why didn't I sue the doctors (my OB/GYN & the NICU dr) for malpractice? I think that in regards to the NICU doc we had a pretty clear case of it. Maybe if I had, I would have enough money to get MM all the therapy she needs & not have to fight with the freakin' school system to get her what she needs. Maybe if I had, I could afford a private school that is more than willing to do the right thing. Maybe if I had, I could just have her get her private therapy (which does an awesome job). Maybe if I had, I could quit my job & be able to better care for her needs & not depend on those yahoos in the school system to do it. Maybe if I had, I could pay for a private aide to attend school with her. Maybe, MayBE, MAYBE...

How about you others that are affected by CP? Did you sue for malpractice or wish you had?

Monday, September 15, 2008


I am very anxious about tomorrow. Not good anxious either. I am very nervous about the IEP meeting. I worked very hard all weekend getting my "ducks in a row". I spent a total of about 12 hours doing research, gathering the info & typing up my notes. I have to go it alone tomorrow cause DH has to stay home with MM & my mom is working. I think I am ready & hope I don't fall apart & start crying. (I usually just cry when I am mad though) I just want things to go well & have them do the right things to help my little girl. I hate that everything has to be so hard when it comes to disabilities and fighting the school system is just another obstacle.

Friday, September 12, 2008

An Award

One of my favorite bloggers, Angela, has given me an award. This is the first time ever for this little blog o' mine. How sweet & cool! Check out Jack's blog & his cute little sister!

I nominate:

One of the blogs that I love to read for her eloquent way with words is written by Nelba. She always manages to touch my heart and put into words what I can not. I pray for her often as she is grieving the loss of her beautiful son & living with two more amazing little boys.

Melanie has an adorable little boy, Daniel, who is doing some amazing things. I like how she writes honestly & is exploring alternative treatments to help her little man. I love how she calls her blog "Better Than Normal" cause it is so often true that having a SNK can be more rewarding making it better than normal!

What can I say about Nancy ? Her stories of Caitlyn often keep me in stitches & I love that she can curse like a sailor (something I am known to do IRL). Caitlyn also is one of the prettiest little girls with gorgeous eyes. She is growing up so fast!

Shannon's blog of her kiddo's, Ben & Kiera, is a great read. Kiera is a real spunky little thing. Ben is often like MM in that he is not severely disabled, but doesn't fit it with the neurotypicals either. She too has started navigating the kindergarten road like us.

Last, but not least, I give my final spot to Bird (whose real name is escaping me at the moment). Seeing pics of her little man, Charlie, always makes me smile. She is another cool southern mom who is checking into alternative therapies as well. She is just learning to navigate this complicated system of being a special needs mom and I know I am going to enjoy watching all the gains Charlie keeps making.

Here are the instructions for the following Brillante Weblog Premio award recipients:

1.Place the Logo on your blog

2.Link to the person who awarded you

3.You can nominate up to 5 blogs

4.Add their links to your blog

5.Leave a message in the comment section of their blog to notify the winners.

Thursday, September 11, 2008

Questioning Public Education

School is so much fun- NOT!

On the surface, MM appears to be enjoying school. She is learning the routine & getting along. Her behavior at home is HORRIBLE! Ugh! So much stimming & melt downs. She is obviously spending all morning keeping it together & then coming home and "letting it all hang out". Needless to say, I am exhausted with her behavior.

We are having a meeting on Tuesday to bring the team together & figure out some things. I already posted many of my concerns here. I hope things get better with school & at home. I have given our private therapists a copy of her IEP so they can help me get some better goals.

I am quickly learning, in this county, that you have to have them put everything in writing on the IEP. ***sigh*** It really makes me sad how much I have to fight them. I just want them to do their job correctly & do a decent job (notice I am not even asking for good anymore). Something funny is the teacher asked ME if I knew where the keyboard was. To me, that is like me asking a patient "Mr. Johnson, do you know where I last put that ventilator you need?" I bet you heard me screaming across the whole eastern United States. I am just hoping to not go bald from pulling my hair out over this!

Monday, September 8, 2008

Have You Tried Wordle?

I plugged in a few words I often use on this blog & this is what I got...

(Click to see in full size- I can't figure out how to make it bigger- anyone know???)

Wednesday, September 3, 2008

Going to School with AUSTIN

From the title of the post, you might think AUSTIN is a child in MM’s class. Nope. It is the way MM read AUTISM the other day and I just thought it was so cute & sweet I had to share. She read it on the cover of the book Beyond Words: The Successful Inclusion of a Child with Autism. So far a good read. One of MM’s OT brought the book out for me to borrow & read. She said she thought of MM immediately when she started reading it. Now, onto the nitty gritty of school.

She has started her second full day week. From the surface, things appear to be okay. She is excited to get on the bus in the morning. She talks non-stop about her "friends" at school. She is generally happy overall. However, all of her lunch keeps coming home. I wanted to call the teacher earlier in the week last week, but (against my gut & better judgement) DH talked me into waiting. I asked the teacher at pick-up on Friday to call me. She said she would at 2:30. The call did not come until 4:55. I was anxious & ready with my list of concerns & questions. By that call coming so late before the holiday weekend, I felt as if she was trying to get out of something. I kept her on the phone until 5:40. I still feel like there are many issues that still need to be resolved.

The conversation started off with me answering the phone "Hello?"- Her "T------, this is Ms. X". **I don't know why, but this rubs me the wrong way. You call me by my first name and expect me to address you as Ms. X. To me, it makes me feel as if she is trying to have a power trip over me or put me in my place. Oh well, get over it, I thought. We made pleasant chit-chat for a minute or two and then got to the list I had.

I asked her if she knew she wasn't eating. She said no, that she would have to ask the lunchroom aides. I asked who helps her get her lunch together. She said she didn't know that she just walks her into the lunchroom, through the children and gets seated in a seat. First of all, she is not supposed to be in the lunchroom. She is supposed to get a sensory break at that time & have enough time to eat. Second, she had been told that she can't get her juiceboxes open herself or the containers her food is in. I reminded her it was on her IEP and she said they were trying it to see how she did. Again, from the surface appears okay, going all day without eating or drinking is a sign that she is not functioning.

I asked her how the potty situation was going (MM keeps crying when she gets home & has to use the potty immediately). She said that they "offer her" the chance to go 4 times a day, but she always says no. She had been told that MM can not get her pants down or pull them up by herself the very first day of school. She has to be taken to the bathroom for assistance. SO, my poor little girl was not peeing ALL DAY at school. I hydrated her to death this weekend and think we have fought off the UTI she was getting cause her pee was cloudy & she was tearful when peeing several times.

UGH! Two of my biggest fears & both of them were realized! I tried to remain calm. I think I did a good job but to say I am upset is an understatement.

I asked where her keyboard was & her adapted seating. She said she didn't know where or that she needed it. I again had to state that it was on her IEP & that it had to be there. She told me that she thinks MM could write if she just paid attention. I was like WHAT!!!???!!! Do you know how long we have worked on this & hours of therapy working on it. I told her are you forgetting she has CP as well as ASD? Her fine motor is really lagging due to that. Trust me, the kid wants to write so bad she can't stand it. She can spend hours "writing" with her label maker. Blood pressure went up another 10mmHg with that statement.

We then continued to talk about a few other things like her new SL/T & her resource stuff. She told me that the SL/T was coming up with a new plan for her. I inquired why she didn't have the same one as last year. She didn't know. I asked to at least be called so I could be involved in her plan. She didn't seem to eager for that. She also said her resource (which is her Aide) couldn't come until 12:00 during the day cause she had to "fit her in" the schedule. That did not make me happy. She is supposed to be there first thing in the morning to do the fine motor stuff. There is an intern in the room though & she is essentially MM's aide or the teacher is if the intern is leading the class. They don't know what to do with her education wise cause she already knows everything in the curriculum. They are going on to first grade stuff with her, but think she will test out of that too. It is on her IEP to figure out what curriculum to use for her & her hyperlexia. She has never had a student as smart as MM. She kept using the excuse that they are trying to get to know the kids & ease into school. That is not a good reason to violate the IEP in my book.

We were supposed to have an IEP meeting last week cause that was what was written on the IEP at the end of last school year. It wasn't done. I am going to request one in writing & remind them of the law about violating the IEP. I guess I am going to have to have the bathroom written into it as well as get the lunchroom stuff moved up. I am also going to have to have a 504 added since she is disabled but gifted. UGH! I hate that it is ALWAYS a fight, but it is worth it to get her what she needs.

To end on a sweet note: When they were doing all the testing the first two days, MM had her peer buddy go from station to station. At the last station, there was a list of 48 words. They asked her buddy if she could read any, she said no, but could she say them. It was then MM's turn. She took the list & read all 48 words after breezing through each testing station. The little girl said "Ms. X, MM is the smartest girl I know". Ms. X said it was so sincere & sweet she nearly cried.

I did.

**Initials are being used & changed to protect identity. Don't know who might stumble upon the blog & I would hate for teacher to find out that I am b!tch!ng about her**