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Observation, cautionary tale

Discussion in 'Parents of Children with Type 1' started by Sarah Maddie's Mom, Sep 4, 2014.

  1. Sarah Maddie's Mom

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    I observed something last night that I thought I would share.

    We had our 504 meeting yesterday morning. It was relatively uneventful but as we have done for the past 12 years we went into it with all the necessary documents, lists, nurse supplies etc. We also scheduled a meeting with the varsity coach to review D stuff and planned a follow up meeting with the guidance counselor to tweak Maddie's college board accommodations. So, in short, the last few days have been pretty D saturated. Lots of talk and document generation and the tossing around of "accommodations" and "504 federally protected…" and so on and so on.

    Late in the evening our dd who is normally pretty easy going about all things D had a bit of a melt down. Suddenly it all sucked, and she hated the sensor and she was sick of juice boxes and so on and so on. And then I suddenly got it. She was observing us and seeing how stressed out we were, how tightly focused we had become on all things D and I think without a doubt she was feeling a flood of negative emotions about what her body had wrought on the family.

    I could see that we had unconsciously, unintentionally and recklessly made her health and her diabetes management into a giant guilt inducing elephant in the room. So that's the observation, and the caution is simply, "don't do this." Try to be mindful of how your "advocacy" looks to your kid, it may look very different from what you think you are projecting.
     
  2. Lakeman

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    I hear you. At our 504 meeting the person running the meeting decided to label my newly diagnosed son as disabled. This would be the first time he has heard the word applied to diabetes or himself. To whatever degree the term applies I just choose not to use it and wish it had been unsaid. Later I talked to my son to re-frame the idea of disabled. For me a man with a heart condition is not disabled if he works behind a desk but would be if he worked at hard labor. So context matters. I told my son that for him disabled really applies in the context of the 504. His first concern when diagnosed was that it would interfere with sports. So far he is in soccer like before and has only been low once. But I think he resents checking and having supplies. I would add that for me one of the worst things is always having to have supplies.

    I hate that at home I am constantly asking the kids what their number is or how they are feeling. As they become more independent I think this will lessen.
     
  3. KatieSue

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    This reminded me of something my daughter said recently. She had gone to a theme park by herself and gotten a locker for her stuff. She left her kit in it (not saying this was in any way a good idea). She said she felt free the whole afternoon not having it with her. It was something I hadn't thought of and I realized just how much she has to think about 24/7.
     
  4. caspi

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    Thanks for sharing this.
     
  5. wilf

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    Thank you for sharing this. We were over-the-top in terms of D management and advocacy for quite a few years, until we realized that it was becoming counterproductive. We eased off the last couple of years, to good effect.

    At 18, DD is now managing her diabetes in a much more laid back fashion than we ever did. She is open and matter of fact about measuring and injecting wherever she is, and has no trouble asking for any accommodations she needs. She just briskly gets the job done with a minimum of fuss, and moves on with her day.

    Having seen how these last months since she turned 18 have gone, I think it is much easier to manage your own diabetes than someone else's. As parents, I think we want to do the absolute best we can by our kids - and maybe end up doing too much if we're not careful.
     
  6. Sarah Maddie's Mom

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    Yes, I think your last point, especially, speaks to the importance of being alert to the need to adapt and adjust your "system" as one's child grows up. I've seen this in our own family again and again as she's matured, and yet I have more than once been slow to realize that I was still framing her needs in ways that no longer fit who she had become. Live and learn '-)
     
  7. Beach bum

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    Thank you for sharing. We too have been going through this and I agree completely with what you say here. I am finally learning to step back a bit and let the helicopter sit on the launch pad a bit more.
     
  8. Sarah Maddie's Mom

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    :wink: yup

    (mts)
     
  9. caspi

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    LOL. Right there with you.
     
  10. kiwikid

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    I am scared stiff of having to stay grounded and letting them fly....

    Rachel sometimes warns me, "don't say anything about Diabetes Mum" ....
     
  11. Beach bum

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    I am letting Abby "fly" in two weeks. The 8th grade is going to environmental camp and staying in dorms. The nurse will be down the hall and up stairs. Abby determined she will do her night care, the nurse concurred as long as she texts her with her BG at 2am, otherwise she comes down the hall to do it. She also did a set change at school yesterday to show our nurse that "I've got it covered!" I know she'll be fine since our nurse will be there, and her sister is sharing the same dorm room, but I'm still nervous about the whole nighttime thing...
     
  12. Portabella

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    Awful. One would think, if they work in the school system, they should choose the words wisely. Very unprofessional.
     
  13. Lisa - Aidan's mom

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    Wise words, thank you for sharing. I hope she is ok today and enjoying school. Everyone deserves a melt down now and then to get all the feelings out!
    Does she sit in with you and the teachers/nurses for her 504 meeting? We don't; I couldn't tell from your post if she was with you, or if this a normal practice once the kids get older and are taking care of their D needs at school.
     
  14. Sarah Maddie's Mom

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    Thanks, Lisa, she's loving her classes and made the hockey team, so it's all good. :) She does not attend 504 meetings, never has.

    She does all her D stuff at school - the nurse just holds extra supplies so our 504 meetings are largely focused on accommodations for standardized tests and midterms and finals. She's never seriously considered stop the clock or small group testing and I suspect that the idea that that was even discussed was infuriating for her. I'm sure well find some balance…eventually.:tongue:
     
  15. DavidN

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    Thank you for sharing this nugget of D wisdom.
     
  16. hawkeyegirl

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    The school has to make a finding that the child has a disability in order to give them a 504. I'm sure the word has been used in all of our 504 meetings. (Our son does not attend them, however.)
     
  17. joan

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    Sarah I always find your posts so insightful

    My son is now a senior in college but this is how his high school experience went. We live in a small town and small high school so the principal told me when he was a freshman lets not do a 504 and if he needs one we can always do it. Since my son has had d from a very young age he knew what he was doing in terms of bs control I agreed. I would bring the nurse some extra supplies and that was it. He never had accommodations for anything. He did let his teachers know he had d and may need a drink or bathroom break. Because he is smart and competitive by nature I knew he was not going to do poorly on a test because of his bs, or he was not going to use his bs as an excuse for doing poorly. Did he come home and say I did poorly on a test because I ran aroung a lot in gym, yes. It killed me. All in all he did great in hs. He had a >4gpa and took all ap's senior year. He is now in a great university on a d1 lacrosse team. Being in charge gave him great independence and the knowledge that diabetes would not hold him back. It also let him know that I trusted him.

    It was hard for letting go and I am only writing this in hindsight. I do realize every person with diabetes is different and their diabetes is different.
     
  18. virgo39

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    Thanks for sharing.

    Life seems like one big tightrope walk. D life even more so ("let kids be kids", "treat the number and move on," versus "watch for patterns", "continually make adjustments").

    I know that I have definitely taken for granted how easy-going DD is about the myriad D garbage she has to deal with--parent/caregiver involvement in almost all food consumed, asking her to test or check CGM, etc. Like so many other things, it is a tricky balance between your child being confident that you are there to advocate for them and your child feeling like D is big deal all the time.
     
  19. mmgirls

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    thank you.

    This year is SOOO much harder, and I am trying to speak softly about how "I am advocating for my kids", but it to is a learning curve to everyone. I is a good lesson to learn that not everyone in the same position will help you and advocate for you. I have had too many matter of fact conversations with my 9.5 year old about the choice of the nurse and the incorrect rational she had for the particular situation, but it is a good learning point to have someone else making a choice and analyzing.

    I will heed your warning and try to filter more of the "little big ears" conversations. Thank you.
     
  20. andiej

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    It's so easy to do isn't. I have to stop asking my son what his levels have been like, straight after school and ask all the "normal stuff" first.
     

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