High School 504 Plan

A lot has changed since the days when I would prepare charts, forms, schedules, plans, etc. weeks in advance of school starting. Caleb started high school today and I’ve yet to dust off his 504 plan from last year to see what updates might be necessary.

I plan on including something for college board testing. Anything else I should consider specifically for a high school environment? Caleb has been working independently for years. Critical items for his 504 plan include access to his phone, ability to check bg and treat out of range blood sugars in class, and that someone trained in his care must always be accessible to him - at this point that means knowing what to do if he is experiencing a low blood sugar that he is unable to treat himself.

Any wisdom from those who’ve been through or prepared for the high school environment is welcome!

Thanks!

If he has a low blood sugar and needs to go to the Nurse’s office, he should have a buddy to walk with him. Regardless of what he may say at the time.

(What if he drops further along the way and gets confused?)

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Yep, I think we have a provision for that - you’ve gotten me to dust the plan off and check - “Caleb will not be left alone at any time, including hallways, when a low blood sugar is known or suspected. He will be accompanied by a staff member or peer.”

I don’t foresee him ever going to the nurse for a low blood sugar. He would either treat where he is, or he’d be passed out and someone would have to come to him.

I once had a disagreement with a supervisor at work when he found me treating a low at my work bench. The shop had a no eating policy. I told him that I needed to treat lows wherever and whenever. He didn’t understand the acute nature of hypoglycemia and the danger that could lurk between my work area and the break room. He was smart enough to figure it out, though.

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Do you already have thoughts as to which grade year you would be planning for the first take at the SATs?

Link to request accommodations for the SAT:

Caleb was required to go to the nurse when he was in preschool and kindergarten. It was illogical for proper diabetes care, and only set up that way for the convenience of the school nurse who is tending to the needs of many children.

When he entered first grade, we were able to make the argument that a low blood sugar needed to be treated immediately, wherever he was. That meant the nurse had to come to him. We were very fortunate to have a nurse assigned to him that agreed with the importance of this. She prioritized Caleb’s care and made this work. I can see how this could be a difficult accommodation to negotiate as it may be considered impractical to have such personalized attention. This was an issue I was ready to fight for, it just ended up we didn’t need to.

He wants to take them sooner rather than later, so could be as early as this year. I expect we need some lead time for this though. When applying to private high schools was still in consideration, I researched accommodations for the SSAT and there were forms to complete in advance. I spent a little time checking out SAT requirements but have not seen the collegeboard.org site - thanks much - checking that out now!

My personal thought on a good choice to take the SAT the first time is the testing date closest to when the student completes Algebra II.

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I did not know what SSD is, thank you for bringing this to my attention.

Caleb’s taking that this year, so maybe we’ll plan for beginning of sophomore year! Thanks for the advice. :slight_smile:

If he is taking Algebra II this year, perhaps the May or June 2018 testing dates?

My concern with math is that over the summer math skills can get rusty.

Note that not every “testing center” (ie -usually high schools) tests on every date. Some locations may do every other date. So if the location you want is not available at perhaps May, it is worth to check for June as it might be then (or vice-versa).

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Modern diabetics have no idea how much better things were for patients in the old days, before the home glucometer and strict control regimens. The schools I was in had always been informed that I had type 1 diabetes, and that was the end of the story. There were no visits to the nurse’s office, no blood sugar checks during class (only urine sugar tests were possible), no interference by idiotic staff with the child’s life, no calling the parents, no care plans, etc. I was just a normal student like everyone else, and none of the students even knew I had diabetes. This was invaluable for my psychological and social development. I worry that doctors don’t realize how they are damaging lives by insisting on strict control, whatever its physical advantages.

I am happy with how the local school handles the children with diabetes. If there are any problems, it can be discussed with teachers or the nurse. Any unresolved issues and the principle is a great person to talk with and to date has proven to be extremely helpful in many situations. I consider it very important for all the teachers involved with a diabetic child to be at least aware of the condition even though they clearly are not experts in diabetic care by any stretch of the imagination nor would they be asked to administer any treatment. However on the off chance that something goes very wrong, the teachers would be able to react faster and call quicker for medical assistance having this knowledge in advance.

When it comes to gym class and after school sports, it is absolutely critical that the gym teachers and coaches are not only aware of the condition but have some understanding as it relates to BG, exercise and food.

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I cannot argue that living with diabetes impacts a person’s psychological and social well-being. I feel very differently, however, about things being better for “patients in the old days.” Perhaps they were simpler, but I don’t think they were better.

From what I have learned from people who live with diabetes, tight control is important to how a person feels from day to day, and of course lessens the risk of complications later on in life. I am grateful that Caleb has all the tools he has available to him and we are able to keep his A1C results within a range that would be considered “non diabetic.” It has taken a lot of work, but its been well worth the effort to educate and recondition the way people in Caleb’s schools think about caring for a student with diabetes. I often start the discussion about his emotional health and how that is as important to care for as his physical health, and that is why I ask for accommodations that might be new to people. I’ve done everything I can to minimize the maintenance of diabetes in Caleb’s life, balanced with achieving the best blood sugar control we can manage.

It hasn’t been smooth sailing the entire way, particularly when he was little. He’s grown up with an emotional burden most around him haven’t. Given the cards he was dealt, we manage the circumstances the best way we can, making adjustments along the way. At the age of 14, having lived with this most of his life, I’m happy to say I think Caleb is a pretty level-headed kid, with good friends, and a focus on school work, sports and all the other things kids his age should be spending their time on, and managing his blood sugar is just something that comes along for the ride.

We’ve been working with school staff for nearly 11 years and by and large they are caring, considerate people who want to help their students, including Caleb, even when that means they have to learn something new and put in a little more effort.

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When I was diagnosed, long before home glucometers and strict control, you took insulin once in the morning (a combination of NPH and Clear or Toronto Insulin) and that was that. Nothing more in the field of diabetes happened during the day, except avoiding eating too much or touching sweets. The biggest everyday ‘complication’ was the danger of forgetting to take your insulin, since the disease made so little intrusion on your life you could simply forget it. But now, with the entire day, every day, smashed into a thousand pieces by intensive management and the perpetual threat of murderous lows, and the threat of complications still present, has there really been that much net progress?

Please excuse this off-topic excursion into diabetes philosophy because I think it can help in the bigger picture. The nature of diabetes hasn’t changed much in the last several decades. Our understanding of it, however, has.

It’s like sailing in the fog toward a bridge. You may know from charts about its location but you are straining to pick up a visual cue as soon as possible. At first you pick up just the hint of a structural outline but as you move closer the picture begins to fill in. This visual knowledge helps you to relax as you navigate safely under the bridge. The bridge was always 100% there; it’s just our perception of it changed over time.

Ignorance can be bliss but once you know even the rough outlines of a situation that affects your fundamental physical well-being, it’s hard to ignore, at least it is for me. I started my diabetes treatment with a once per day NPH insulin injection but I did have fingerstick info without a meter in the the early years. I used the visual BG Chemstrips and compared the relative color of the strip pads against a reference chart. So I did have some feedback about my relative control. I valued that feedback as it helped me begin to learn about my diabetes.

I do not resent, however, the unbelievable amount of data available to me about my daily passage through life’s uncharted waters. It does take more time and thought to use that data well but it allows me to generally avoid painful and serious obstructions. I’ve found that this huge increase in information can be folded into my daily routine and habit does most of the heavy lifting. I still have plenty of time and attention to enjoy what life brings.

I embrace intensive diabetes mangement because it makes me feel better right now, both physically and emotionally. There are no guarantees in life except that we will die one day. I accept that deal and will not let that reality suck the joy out of now.

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When I think of my son feeling well every day because his blood sugar is maintained in range, he’s able to eat what and when he chooses, with a reduced threat of complications, I would say, yes, there has been progress. He is also using a closed loop system which significantly reduces the risk of out of range numbers - I don’t consider him as having a perpetual threat of murderous lows. So again, I say yes there has been progress and will continue to be as these systems are made available commercially.

I found a dramatic improvement to Caleb’s quality of life when he switched from injection therapy to pumping. I would say the introduction of insulin pumps was great progress and another fantastic step forward was made with CGMs.

I agree that the therapy is theoretically the same as when insulin was discovered, but its practical application provides so much more precision resulting in positive outcomes for the patient, it’s hard for me not to consider that significant net progress. I also agree that the therapies that allow for that level of precision in their currently available commercial form, require more work. I don’t quite see it smashing the day into a thousand pieces though, so our perspectives vary.

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I had to save sample of urine at lunch so my mom could test when I got home. I’m still scarred by that today…lol. Other than that I guess I was “normal” whatever that means.

It is interesting that so many people say they feel better with their blood sugar closer to normal, but for me it is just the opposite. The closer I come to normal, the more tired, mentally exhausted, impatient, and uncreative I am. And this is not because a normal blood sugar is abnormal for me, since my A1c has been in the 4 range for a decade. I wonder if people just think they feel better with a more normal blood sugar because their knowledge of their current blood sugar number makes them think they should feel better, so they imagine they actually do feel good.

This is very unfortunate. I’ve not heard this experience from anyone else before. The exception would be if someone is hovering too close to low, but it sounds like that isn’t your issue. Caleb went through a period where he felt low and was not - that’s the closest I can come to relating to your experience. Is this somethjng you’ve addressed with your doctor?

Seydlitz, a couple times I have called my high school/college with T1 experience, as “Don’t Ask Don’t Tell”.

Yes there was the little card at beginning of school year telling the nurse that I had diabetes. Most of the time I had a bg meter with me (although I was not good about using it) and at the time on the NPH+R regime I did not take any shots in school.

There’s no way the school nurse could’ve helped me with diabetes care.

I got pretty good at dealing with school and diabetes at same time without any help from others and I think that was valuable to me in my life.

At same time I had a WHOLE LOT of hypos that I self-treated under what I call today “Don’t ask don’t tell”.

It sure was different but I’m not really sure it was better.

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