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Old 07-14-2006, 07:51 PM   #1
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dmm333 HB User
7 year old with mild cp

My daughter did not walk until 2.
She was diagnosed with a form of mild cp.
She had major sensory problems (clothes, food, textures, pressures).
She had speech problems.
She had eating problems. She would keep food in her mouth for the whole day and then I would have to dig it out at the end of the day. She was accepted into a 6 week childrens eating program to help her with this problem.
My daughter never crawled and didn't like motion, pressure, or different sensations.
She had three years of intense therapies (early intervention - speech, occupational, and physical). From ages 2 to 5.
She qualified and was accepted into two local state run early intervention programs.
At age 5, she transitioned into the public school system. By then, she made tremendous gains and by all accounts appeared "fine". I mistakenly opted to not carry forth her documentation because I was afraid she would be labeled and treated differently.
She had a seizure when she was five. I am suspicious it might have had to do with her mild cp. None since then thankfully.
Sometimes I see minor hand trembling.
In pre-school, she would never sing or dance, or interact with the other children. My sense was that she processed things at a slower rate and didn't want to appear slow. I would sing her kid songs in the car and she would scream.....I think because she couldn't sing along too. In fact she screamed a lot and still does. Because her speech was quite delayed,she would communicate through grunting that developed into screaming. To this day, when she gets upset even in a minor way, she will scream like a "possessed" child. If our neighbors didn't know us well, they might think we were torturing her! My daughter has frequent...and I mean frequent meltdowns. She cries a lot, gets frustrated easily and spends a lot of her home time screaming and being angry. My guess is that she is overwhelmed and exhausted by all the daily expectations and then when she gets in the comfort of her own home, she has these crazy sessions. She went through kindergarten with no problems, and just finished first grade. Although she is not the brightest and most advanced in the classroom, she holds her own for the most part. When I have volunteered in the classroom, I see her working hard to do a good job. Because of what I believe to be "extra" internal effort, she often works quietly on her own. She is extremely well-behaved in the classroom because she is so quiet/deep in thought.. The teacher has classified her as a well-behaved, good independent thinker (even going so far as to write this on her last report card). The way it works at her school (and probably most public schools) is that because there is not enough funding, they create "combo" classes. These are classes that are multi-grade. There is one teacher teaching two different curriculums to two different grades of students in the same class. What ends up happening is that a lot of "ditto" sheets are handed out to one group while the teacher instructs the other group. Technically, a student in one of these classes receives instruction only 50% of the time. When they place students in this class, they look for quiet, well-behaved children who can work by themselves. That way, the teacher can handle the class situation better. I am convinced that my daughter's first grade teacher has placed her in one of these classes (for second grade). I asked the teacher to not do this and even mentioned how my daughter had significant delays with all of her infant milestones, but with the teacher not being an expert in this field and not grasping my valid concern, I think she ignored my request. We e-mailed the principal asking him to reassure us that our daughter was not in a combo class for the next year and even mentioned that we had some medical concerns that we would like to talk to him about. He never replied. After a second e-mail demanding an answer, he replied with the school p.r. Basically, that they place students based on teacher recs, parent input, friends, and many other factors and that I would just have to wait like everyone else (until the day before school starts) to find out what class she is assigned to. We sent another e-mail to him saying that we wanted to meet with him to discuss this issue and share our concerns. He never replied. Finally, a fourth e-mail to him summarized my daughter's medical problems and told him that we wanted to meet with him regarding this because we want to start documenting our daughter's progress. I remember my last meeting with her neurologist, he told me to be vigilant during her school years because we won't know the extent of her learning disabilities, if any, until then. I am just trying to be her advocate, and I am getting absolutely no support from the principal. He never responded after my last e-mail and I don't imagine that he will.

I need some advice here. I feel like I am being a bad guy here. Don't you agree that I have a valid concern? Where I feel like I need to be an advocate for my daughter and not let her get swallowed by the school system, the principal is treating me as a nuisance. Because my daughter doesn't have an outward appearance of a disability, he must think that I am making this whole thing up just to get what I want. I am not!! I admit that it may seem strange to bring this up now and not in kindergarden, but in my last e-mail to the principal, I admitted that I had made a mistake. After three years of daily doctor's appointments, and with the tremendous gains that she made, I put things on the back burner. Now, with the classroom and educational expectations getting harder and more demanding, I know that I must get back on the horse. I have to get out of my partial denial and be her advocate because no one else will. I want her to be in a classroom where 100% of instruction is grade specific and where her peers are kids of the same age. She needs a strong, experienced and nurturing teacher. I get so mad when I think about all of this. Why does it have to be so hard? Why am I scorned for questioning the school's placement methods? Help! I would appreciate any thoughts, comments, experiences, or advice you could give me. Thank-you.

 
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Old 07-19-2006, 08:16 AM   #2
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Steffers2318 HB User
Re: 7 year old with mild cp

Hi,

That's a tough situation...I don't have any personal experience with something like this, but maybe would it be possible to get her mental abilities evaluated by someone, and then send the results to the school? Or have a doctor send a letter regarding the need for her to be monitored more closely? I think that the school would tend to listen to someone with "expertise" before they'd listen to you (not that you don't know what you're talking about, but they probably think you're just being overly concerned or something).

Also, maybe it would be better to call the school directly as they can't avoid you then like they can in email. If you do either of the above and the school still ignores you, maybe consider asking a lawyer to write up a letter....something about the ADA and schooling, or anything like that....when I was in high school, there was one handicapped bathroom, even though there were two buildings with three floors each. My mom said something to the school about how it was really hard and a little dangerous for me to use a regular stall most of the time. They said, "well, she should go use the handicapped one." Weelll that kinda wasn't very practical when I had to go in my three-minute break between classes and I wasn't on that floor. My mom researched ADA laws, found stuff about the required accommodations in public schools, sent them a letter that outlined the laws and basically said she was going to sue them if they didn't do something...the next week they were putting handicapped bathrooms on the other floors .

So, when all else fails, at least tell them you're going to contact a lawyer...that always scares them . Don't give up, good luck!

 
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