Apparently 1 diagnosis date is not enough…

My son was diagnosed (dx’d) with Type 1 diabetes on July 25, 2007. He was a baby. He was just 4 years and 1 month old.

A baby.

He is now in the 3rd grade, turning 9 in June. July 25, 2012 will be 5 years for us. This is a pivotal year for us. As of July 25, 2012 he will have diabetes longer then he has been on this Earth…(I see another post coming out of this)…

School just called and asked if my son has another diagnosis date for his Type 1 diabetes because the one they have for his 504 plan has expired. I politely explained to the ‘power that be’ that with Type 1 diabetes there is only one diagnosis date and unfortunately there is no cure so there is no way our diagnosis can expire.  The one date remains the only date of diagnosis.

‘Power that be’ proceeds to tell me that in order for the 504 plan to be carried through to next year, we have to provide a new diagnosis date every two years.

I will not provide a second diagnosis date.

It has taken me five years to come to terms with the fact that my son’s life drastically and forever changed on July 25, 2007. My son has endured over 18,000 finger pokes over the course of those five years. Each one of them a tiny badge of honor that he is a true hero in fighting this disease day in and day out. Not to mention the thousands upon thousands of carbs we have counted, the thousands of units of insulin we have used, the thousands of shots to give that insulin and the hundreds of site changes to change his pump site, no I will not change our diagnosis date to fill in paperwork.

Perhaps the paperwork should be changed for my son. Perhaps instead of a diagnosis date there should be a ‘living with’ date. This child -insert name- has been kicking the crap out of Type 1 diabetes since he was diagnosed -insert date- and will continue to do so until there is a cure…this seems like a perfect sentence to put in a 504.


So I told the ‘power that be’ just that. No, I will not change my son’s diagnosis date for the benefit of some bureaucratic paperwork. I told her maybe the paper work should be changed to acknowledge that there is indeed only one diagnosis date with Type 1 diabetes, it never goes away, no matter how many stars we wish upon. She was stumped. I’m sure it wasn’t the first time.

I agreed to send a letter stating that my son does indeed still have Type 1 diabetes but by no means will I change his diagnosis date.

You can’t change the date of Pearl Harbor. The day that shook the US Military.

You can’t change the date of Sept. 11, 2001. The day that crushed America.

You can’t change the date of my son’s diagnosis. The day that broke my heart.



17 Replies to “Apparently 1 diagnosis date is not enough…”

  1. Silly, stupid, hurtful paperwork. That’s what it’s all about. The school needs to learn from this and not upset another parent ever. They get so caught up in filing things to be “in compliance” they forget there are humans, like your child (and you) involved). Hugs

  2. I like the stand you are taking! A type 1 diabetes diagnosis can’t expire. The day my daughter was diagnosed time stood still. I can recall every detail of this day because it was a day like no other in my life!

  3. WOW, hun! I thought I had seen a lot of stupidity in the systems… a new dx date every 2 years is a new one!

    did you ask them if they have 2 birthdays? maybe they were born on 2 different days and they think that everyone has lots of dates for important life events…

  4. Thanks for reading Janis. I will bring it up at the 504 meeting. I am sure it is a checklist but our lives are not checklists and they need to be reminded of it.

  5. I have seen both sides of 504’s and IEP’s as a parent and as a classified employee in my local school district. One thing I have learned with kids coming in from other districts with IEP’s and 504’s is that EVERY school district has their own form and own criteria for the boxes. More than likely, that employee has a box that they need to fill in and did not understand what options she had to fill it out with. A current letter from a doctor will suffice for something like mood disorders that can get controlled to the point it might no longer affects school work, or a hearing problem that surgery could fix. But for life long issues like diabetes, that does not apply and is appalling to even be asked for. It might be time to go have a conversation with the administrators in the special education department at the district office. Many times I have found that trying to please one person or group, the higher ups have forgotten what the goal was.

  6. Leslie
    My mother always said the smarter they are the dumber they are. I guess she could foresee the future for her great grandson’s educators. Smack me if I ever say anything that stupid.Love Mom

  7. Val,
    Thanks for reading. Sorry you teared up at work 🙂 How ridiculous that even as adults you have to jump through hoops. Every three months? That is ridiculous. I wish we could forget to renew…

  8. Beth,
    They are beyond clueless. They never have any idea what they are doing on that level. Thank goodness we have great teachers and a great nurse that ‘get it’ with or without the 504. Our district rewrites it every 2 years, we discuss the in between year, so I guess to rewrite it they need an updated letter. Maybe they will ‘get it’ this year and rewrite the format.
    Thanks for reading!

  9. Great post! You made me tear up at work. And WTF do they mean about an expiring diagnosis date?????

    I agree about the ridiculous hoops we have to jump through for some stupid forms – I tried to ask for FMLA time to cover unpaid sick days over and above the few we get at work, only to discover that I have to have a doctor certify every three months that I still have Type 1. Apparently, they are worried a cure will come out and I will fake still having diabetes to get more unpaid time off…

  10. WOW! Sounds like someone is beyond clueless. I have never heard of that and we’ve had a 504 for 5 years now. The amount of time our son has been living with it. He was 4 years 3 months at Dx. We discuss the 504 every year and I have never heard of a Dx date expiring.

  11. Exactly Karen. I told her how I wish it would expire then I would just conveniently forget to renew it. I think as I explained it that even she was embarrassed calling to ask for a new letter. Thanks for reading!

  12. I don’t get how a diagnosis date for any disease can “expire”. That has to be one of the dumbest things I have ever heard.

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