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Re: [CEREBRAL PALSY CLUB] Intro and a question

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  • cheryl williams
    Dear Tracy, I can definately understand where you are coming from and trying to understand all of the rights these children have not to mention learning all of
    Message 1 of 2 , Feb 11, 2003
      Dear Tracy,
      I can definately understand where you are coming from and trying to understand all of the rights these children have not to mention learning all of the medical aspects, with the medications is alot for any parent to handle. I have done some research and have found some web sites that may be helpful for you. The first one is an awesome site that has alot of topics and laws and rights that are available to these children and how to go about advocating for what your child needs. The web site is
      It also has alot of other links to web sites with other pertinate information that may be of use to you. One thing I know is you know your child better than ANYONE, you know the potental of your child, don't let someone tell you your child isn't capable of doing something. In my son's IEP I wanted him to be able to communicate with me, in terms of yes, no, etc. because he experiences severe headaches, stomach pains, etc. and I can't tell where he hurts. I will back up a bit, my son, Spencer, who is now 8 years old was born 7 weeks premature, had a grade 3 brain hemorrhage at birth, suffered from hydrocephalis at 4 months, the doc misdiagnosed that saying it was colic, he then started having seizures at 8 months of age and was diagnosed with CP at 15 months of age. At 18 months he was diagnosed with status epilepticus, to date his longest seizure was 8 hours. Anyway, I knew he was intelligent, he can't get his little body to do what he wants, be he's in there. He has never given up on himself, he combat crawls, rolls, holds his head up fairly well, but he had never given up. I told the school I wanted him to be able to communicate better, they said, maybe with a communication board when he gets into his teens, I said no, I want it done this school (last school year) I am happy to tell you that he answers questions, yes and no questions, he communicates to me when he is hungry and thirsty by telling me bite and drink, if he doesn't feel good, I will ask and he will say yes or no, then we go thru a process of elimination of yes and no with the body to find out where he doesn't feel good. Talk about rambling, anyway, my point is at least look up on Wrights law web site and read up on some of those articles, being a better advocate for your child helps and just knowing what to ask for helps tremendously. God knows nobody else is gonna do it except the parents of these children. I have also found that alot of schools, programs, etc. don't seem to want to "give up" the funding that is available to these children, it is not up to them to decide, this is where wrights laws come in handy and help in those situations as well. I hope this helps some.
      "sitinonthebay <scholzp002@...>" <scholzp002@...> wrote:Hello everyone,
      My name is Tracy and I have a 4 1/2 year old boy with CP (spastic
      quad) as well as hydrocephalus, low vision, and all sorts of other
      issues that have yet to be diagnosed. He has these problems due to
      being born 11 weeks early as well as doctor foul ups. He has done
      very well considering the fact that they say he should not be with
      us. What has pushed me back into the relm of online support is the
      fact that I live in an area where I don't know anyone here who is
      dealing with these issues. We had all the support in the world
      before we moved here (HI) and since being here, I have absolutely
      none. We have had an awful time of it and I am quite frankly, FED UP
      with the whole thing. I love my son and wouldn't trade him for the
      world, but I am so sick of dealing with the school and medical
      community here that I am ready to just ask for Prozac or something to
      see if it will help...don't think it will though.

      Anyhow, I don't mean to be a downer like this I am just tired. I am
      also at a loss with this IEP stuff. Mainly with the issue that my
      son can not scribble very well let alone make real efforts towards
      writing. I am trying to get the school to move him onto learning to
      use computers as a way to read and write and they don't want to move
      in that direction. He will go to Kindergarden next year and for the
      life of me, I don't know how they expect him to do his work. He is
      currently in his second year of Pre-school/K. We switched him from a
      FCC placement to an inclusion setting through a private Pre-school on
      Dec. 10, 2002 and its been wonderful. But we have an IEP late this
      week and I am at a loss of what to even ask them for (his current IEP
      is garbage). Prior to all of this our meetings here in Hawaii have
      all been worthless. I have tried to find books that have examples of
      IEP's for children of different age groups but can't find even on.
      Can anyone here give me some good ideas on what to ask for, or things
      you may have done with your children who couldn't write to give them
      a way to do their work.


      Thank you all in advanced.

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