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No good deed goes unpunished!

Discussion in 'Parents of Children with Type 1' started by MamaChrissa, Oct 4, 2008.

  1. MamaChrissa

    MamaChrissa Approved members

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    Just a bit of back-story...
    Before leaving work, very reluctantly, to have and raise the twins, I worked in the MR/DD field as a service coordinator. I used to work with my consumers to ensure they had access and were receiving all the assorted services they needed/were entitled to. I know how to talk the talk and how to advocate. My dad has also been a disability advocate all his life, he continues to work with the oldest and largest blind civil rights group in the country.

    When J started his current school, last year, I had to fight from the get go. His IEP (drawn up months before he arrived) had in it that he was to have a 1 to 1 health para. Not only did they not have one for him, they gave me guff about needing one. I stuck it out and 2 weeks later he got someone. She was untrained and had her own ideas about what she was to be doing. I had several disagreements with her (wanting him to eat lunch in the nurse's office, micromanaging what he ate...over my explicit direction...). Eventually she left and J got a real gem of a para. She was great, very understanding and willing to learn. She also had enough understanding to know that he should be treated like any other kid. I was so pleased I asked if she would be willing to work with hm again this year. She was more than happy! Yay! :)

    During the spring last year, I started working with an acquaintance from school who believed her DD had T1. I gave her my Endo's number, my cell phone number and offered my assistance in paperwork for school and all my D knowledge. Turns out her DD was T1, and in the early stages. Finally, over the summer the girl was put on Insulin and now is in training for the p[ump. Suffice it to say, I have been very busy helping her. I should also mention that this woman has a self described "learning disability", and in my personal opinion, that is an understatement. So, I have been working with her...and working...and working...

    Since her DD is now on the Insulin it was my opinion that she should have her own Para. (The justification for the para generally is asymptomatic hyops and immaturity. The girl, as well as J are both not yet 6 and in the 1st grade and both asymptomatic.) I gave her the paperwork, told her the exact verbiage to use, and to whom to give the paperwork too.

    Finally all the paperwork goes through. Seems the school is low on funding. J needs to SHARE his para with the girl! :eek: They are actually changing her class so she can do this! I am livid!

    According to the school, who clearly never bothers to read a damn thing, J and the girl, only need "escorting". I have no clue where they get that impression. Indeed, literally yesterday Jason started classroom testing, to cut down on time missed from class. Come to find out that he may have to forgo in class testing, because of the new girl. Im ready to scream!

    I am more annoyed, I guess, because the school knows darn well I am very active in my kids lives, I know the law and know more about D than anyone in that entire building. Indeed, I had a legal mediation with them last year regarding my DD and won. And, at the request on the Principal, discussed services and procedures with the parents of 2 Kindergarten kids with D just a few weeks ago!

    I feel used! :(
     
  2. SamsMom

    SamsMom Approved members

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    How frustrating for you, Chrissa. I don't have anything to offer except my sympathy. I would be livid, too. Is this a public school? Why is it that so many public schools don't get it? One would think they would know the laws especially regarding disabilities. Vent away...there have been a lot of frustrated parents lately with the 504 fights, etc. You are not alone!
     
  3. tiffanie1717

    tiffanie1717 Approved members

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    I'm so sorry!! Funding is the biggest culprit in our quest for adequate care for our children, if you ask me. Ignorance is not far behind.

    Hopefully it will get worked out better and soon!!

    {{hugs**** and support while you're going through this!
     
  4. sammysmom

    sammysmom Approved members

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    I'm sorry about the situation but it is not at all rare for children to share para's. They do not have to be with the child all day long. Just around for the testing and blousing and what not. My son's school has 4 diabetics and they all share 1 para. The testing still gets done in the classrooms also. I do see that for funding puposes that sharing a para is the best idea, although the current schedule should not have to be rearranged. She will just have to mulitax to be able for both children to test in the classroom.
     
  5. MamaChrissa

    MamaChrissa Approved members

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    Thanks! Yup, its a public school. Just frustrated, I guess. There I was just thinking the other day how pleased I was that I hadn't had to really fight much for J's accomodations! :rolleyes:


    Oh, I do understand about funding and I do understand how fortunate we are that this service is available to us. The problem is that the service IS available and part of a legal document the school drew up and agreed to. It clearly says "1 to 1 para" on his IEP. Period. That is what they agreed to and that is what they will provide. Im hoping that it was just a clerical error or a miscommunication. Im trying to keep an open mind. We are also talking about the largest school district in the country. Other funding sources are out there.
     

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