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Discussion in 'Parents of Children with Type 1' started by theMad_D_Dad, May 14, 2013.

  1. theMad_D_Dad

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    Thank you, so do I! I just got done filing a complaint with the Office for Civil Rights, so we should be contacted by them soon.

    (btw that quote in your sig is hilarious. I love that, definitely put a smile on my face.)
     
  2. theMad_D_Dad

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    its a joke.
     
  3. caspi

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    OK, I'm just going to be blunt here. The video states that CPS showed up at your door because your child was out of school for 15 days and shows your wife as stating one time was because your daughter had a nightmare in the middle of the night because of a high BG reading. Don't get me wrong -- there are times our kids need to miss school because of sickness and ketones but I have to tell you there are nights when we are up either chasing a low or combating a high and my son will still go to school the next day. Why? Because that's life. Yes it sucks that our kids have T1 but it's reality. You guys have been at this for 4 years now so you're not new to any of this. I'm honestly not understanding what you mean when you say you want them to pay. What are they to pay you? :confused:
     
  4. theMad_D_Dad

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    You obviously didn't read my post. Pay me? I'm not after money... I meant that figuratively.
     
  5. caspi

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    But I did read our post(s). I'm still not understanding what you are trying to achieve here.....
     
  6. Emilyk1054

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    I'll clear this one up.. since I am the wife :)

    My daughter has missed 15 days of school this yr. The quote in the news story was put completely out of context. It was actually a response to being told that the superintendent of the school actually believes that the complications from type 1 are not as bad as I let on. I was a little emotional and outraged. The highway from brain to mouth was a little congested, and of course that is what they chose to air. Of course I do not believe diabetes is a reason to miss. Some complications that may arise, and more than adequate to have a sick day. If my child pulls a site out in the morning while getting dressed, or is having a stubborn low.. we may be tardy! And no, I should not have to run her to the Dr. office every time to have an individual dr excuse.

    Now, on to the 15 absences. The 15 'unexcused absences' include Dr. appointments, and tardies. If you are so much as 1 minute late it is considered half a days absence.
    The news story was not even originally supposed to be on absences, at all? but rather on the school making us wait until the very last week of school, and telling us our daughter does not qualify for a 504 plan. When the story aired and I quested what the hell happened, I was told it was bc the general pop does not even know what a 504 is.


    Now, on to the 15 days and why we are in hot water.
    At the beginning of the school yr, in the 'mean time' of waiting for our 504, we were suggested to get a IEP. Also told to get a blanket, or chronic illness excuse to cover the many absences that we knew we would have. The reasoning behind this also, is bc our school requires a dr excuse to be faxed from the physician, mailed from physician, and a hard copy brought in by the parent. It was actually a truancy officer that contacted us and suggested we get this to save us hassle in the future, so of course? we did with no problem from our Dr.

    A little over a month ago, we were asked to come in for a sit down at the school, where we were bombarded by a second truancy officer. He informed us that type 1 doesn't qualify as a 'chronic illness', so he could no longer accept our blanket excuse. When I offered to get individual dr. excuses for all absences and tardies under that excuse we were told 'too late'? that all excuses had to be turned in within 24 hours of the absence.
    As for the crap that comes along with diabetes? I am more than well aware that this is our life now, and we have to roll with the punches? however?

    If I do not feel my child is safe, I will 100% stand by my decision to keep her home.

    As for CPS? another mistake in the story.
    CPS was not called due to absences. CPS was called by my daughters teacher.. bc if I raise hell over my type 1 diabetic daughter NOT getting a cup cake, what kind of mother am i????

    For all those who didn't read the blog.. long story short. A childs mother brought in cup cakes for the childs bday. It was a little more than an hour after lunch, so my daughter was still a little high. Therefore, my child had to watch everyone in the class eat a cup cake, while she was given some crackers. They decided that since she was high, she could not have the carbs. I was never called. It even lists this situation in her Dr. orders (and our iep) that she should always receive special treats at parties, parents should be notified, and insulin given accordingly. Of course I raised hell. We have went over this SEVERAL times. Actually had a discussion about this the week prior in the meeting where we were denied the 504.

    Ive said several times "I can fix a high BG. I can not turn back time, and make her feel like everyone else"

    Not to mention, she didn't get a cup cake bc the felt she was too high for more carbs? But they thought carbs uncovered in crackers were so much better. *rolls eyes*
    THAT is why CPS was called. BC I must not be taken care of my child if I would allow her to have a cup cake!


    As for making them "pay". No, we do not mean pay US. But yes, they need a 'slap on the wrist'. There has to be SOME sort of consequence to make sure this never happens to anyone else.
     
    Last edited: May 16, 2013
  7. theMad_D_Dad

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    Ok... Then what are you not understanding? They have almost killed her more times then I'd care to count... If you're fine with sendInv your child to unreliable care givers that's fine, not I
     
  8. caspi

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    Wow! I'm sorry you are going through this. Thank you for the explanation as it makes much better sense than what your husband posted. But that's typical of husbands, isn't it? ;) If you haven't already done so, please contact the ADA.... http://www.diabetes.org/living-with-diabetes/know-your-rights/how-to-get-help/filing-complaints.html.

    I wish you the best of luck and hope you're able to get things straightened out. :cwds:
     
  9. Emilyk1054

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    Gotta love em :)

    And for the record, most of the "?" in my post are supposed to be "..."

    Forums are moody.
     
  10. redrider

    redrider New Member

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    Hi

    Hi Mad, I understand a little of what you're dealing with and I'd like to share my own story. I was diagnosed with T1 at age seven. For the first couple of years, the burden of diabetes didn't fall on me; it fell on my parents. My mom and dad did so much for me in those few years. My dad told me so many times that if he could, he would be diabetic in my place. It didn't really help, but it was a precious sentiment and showed how much he cared for me.

    When I started taking the reigns, I realized how much work it was. The endless checking, the shots, the reminders, Mom asking what my sugars were, the ketone strips, counting carbs, and all the do's and don't's(mostly don't's in my mind) of diabetes. I came to hate diabetes. I longed for sweets and eating without prerequisites and thought all I wanted was to be "NORMAL". I punched the walls(pillows if I had to be quiet), and cried puddles of frustrated tears.

    Years later, I went to high school, and found out that "normal" was a myth. "normal" people don't have it that easy, either. People have all sorts of problems, from ingrown toenails and a sprained knee, to heart problems and cancer.

    While this still doesn't make it okay that I have T1, it does mean that while I have problems, everyone else has different problems; and while I may have to deal with my problem every single waking minute, I don't have to deal with their problems as well. Everyone has something that they're an expert on, because it affects their life directly. It's only by chance that mine is diabetes and theirs is knee replacements or alzheimers.

    Not everyone knows about diabetes, but that is simply because it hasn't touched them yet. With the pandemic status of diabetes, probably very soon everyone in the US will know SOMEone who deals with diabetes every day. Ignorance is not their fault, only their misfortune.

    You could be the one to educate them, so that when they meet someone else with diabetes, they will understand a little of what it is. Your daughter could be a little ambassador of diabetes, spreading the word to her classmates and everyone she meets, so that when they meet another person with diabetes, they will understand, a little more than they do now, how hard it is to have diabetes.

    You have had this incredible burden placed on your shoulders without warning, and it is only natural that you should hate the thing that makes living so difficult for your family and your daughter. That kind of anger does NOT go away overnight, even overyear. You've only been dealing with this four years. It took MANY years for my own anger to finally lose its hold on me, and it may not be entirely gone.

    Do NOT give up hope. This is only the beginning of life for your daughter. She has SO MANY wonderful things to experience ahead of her, even WITH diabetes. It's not the end.

    I'm so glad you posted instead of keeping all this bottled up inside. We are all here for you, to help you and your daughter conquer your demons and emerge in a brighter future.
     
  11. nebby3

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    I haven't been able to keep up with all the replies . . . But, Mad D dad, I was wondering if you have ever considered homeschooling? Now I know after all you have been through you may not want to let the schools off the hook but honestly, you sound like someone the schools just aren't working for. I can't imagien your dd is getting the best education with all this going on and in one of your firts posts you mentioned doing extras like art with your kids (hope i am remembering right). You sound like you'd make a great homeshcooler to me.
     
  12. Turtle1605

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    I do want to tell you that I went to my doctor not long after my son was diagnosed. I could NOT stop crying, I was angry and I would stay awake days on end in search of a way to fix it. My doctor told me that my reaction was completely normal to the trauma and prescribed an anti-anxiety medicine. I can't tell you want a difference it made. You may want to ask your doctor of something similar may help you. Hang in there!!!
     
  13. theMad_D_Dad

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    Thank you, I have made an appointment to go in and speak with my doctor about this very thing.

    And as for homeschooling, yes we have gone back and forth regarding this topic. There are pro's and con's that have kept us from giving a definite yes or no. But, the more information I receive the better I am liking the sounds of it. The only thing now is, if we go through with the legal issues plaguing us at the moment I almost feel obligated to keep her in school. But, with that being the only reason, we are still leaning towards home-schooling next year.
     
  14. caspi

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    Maybe the third time will be the charm. ;) Have you contacted the ADA regarding your school issues?
     
  15. theMad_D_Dad

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    And yes we filled out the paperwork and sent it back in.
     

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