Revisiting 504 Resources
Some parts of the country are back to school already while some of us have a few fleeting days of summer left to enjoy. Either way, it's time to think about 504 plans. These documents outline the accommodations which will be made by the school to allow a child to manage a medical condition without compromising education. Or do they allow for getting a good education without compromising on needed medical attention? Either way, if a child has diabetes, a 504 plan is important. Knowing how to secure one and what to put in it can be tricky. Below is a post I wrote last fall after updating my daughter's 504 plan at her then new school:
Last week I met with our school's 504 team and finalized my daughter's plan for this year. In the past these meetings were somewhat routine. Going into a new school, with a more complicated schedule and a whole new cast of characters, I felt it important to do my homework and enter the process prepared.
Below are a few resources which might be helpful to parents who are entering the 504 process for the first time, or who are looking to make some significant changes or updates to one which is in place:
The American Diabetes Association has a Safe At School campaign. This includes a publication which they will send to you and/or your school. It provides comprehensive information about all kinds of diabetes issues which could arise and ways to handle them. The Safe At School section of the website provides links to additional staff training resources as well as sample 504 plans, and good advice about working with staff to obtain the best support for your child at school. There is also a very thorough section on legal resources. It explains channels through which to proceed should you be unable to secure a 504 plan for your child, or secure the reasonable accommodations you wish to have in there. Also helpful is a directory of applicable state laws which relate to diabetes in school.
The Juvenile Diabetes Research Foundation puts out a 'School Advisory Toolkit'. It comes as a hard copy from your local chapter, or is easily requested to download yourself. It contains an overview of the 504 laws and practical information to help put one in place at your school for your child. There are helpful samples of 504 accommodations as well as sample forms for different circumstances, such as one for a teacher to leave for substitutes.
Both ADA and JDRF have helpful back to school webcasts which can be viewed anytime through their websites.
Children With Diabetes has a page on Diabetes At School. It contains links to a multitude of resources. These include sample plans and forms, legal information, SAT testing rules and advice, and links to a variety of publications and websites which also deal with this issue. Unique to Children With Diabetes is the opportunity to look at past polls, message board conversations and ask the expert results around this issue. Reading how real-life situations have been resolved can be helpful in brainstorming solutions for your own.
A common theme throughout these resources bears repeating and emphasizing. Taking the time to make sure school staff understand a bit about Type 1 Diabetes will go a long way. Educate staff about the effects and dangers of high and low blood sugars and the process of keeping them at bay. Explain, with examples if you possibly can, how diabetes has affected your child's school day in the past. Use this information as the basis for making your requests regarding how your child's diabetes is handled at school.
Our 504 process ended with a mutually agreeable plan. More importantly, it ended with our school's staff having a better understanding of Type 1 Diabetes. Most importantly, it ended with an understanding that my daughter, the school's staff, our doctors, my husband and I are a team working together to keep my daughter's diabetes from getting in the way of a good education.
Last week I met with our school's 504 team and finalized my daughter's plan for this year. In the past these meetings were somewhat routine. Going into a new school, with a more complicated schedule and a whole new cast of characters, I felt it important to do my homework and enter the process prepared.
Below are a few resources which might be helpful to parents who are entering the 504 process for the first time, or who are looking to make some significant changes or updates to one which is in place:
The American Diabetes Association has a Safe At School campaign. This includes a publication which they will send to you and/or your school. It provides comprehensive information about all kinds of diabetes issues which could arise and ways to handle them. The Safe At School section of the website provides links to additional staff training resources as well as sample 504 plans, and good advice about working with staff to obtain the best support for your child at school. There is also a very thorough section on legal resources. It explains channels through which to proceed should you be unable to secure a 504 plan for your child, or secure the reasonable accommodations you wish to have in there. Also helpful is a directory of applicable state laws which relate to diabetes in school.
The Juvenile Diabetes Research Foundation puts out a 'School Advisory Toolkit'. It comes as a hard copy from your local chapter, or is easily requested to download yourself. It contains an overview of the 504 laws and practical information to help put one in place at your school for your child. There are helpful samples of 504 accommodations as well as sample forms for different circumstances, such as one for a teacher to leave for substitutes.
Both ADA and JDRF have helpful back to school webcasts which can be viewed anytime through their websites.
Children With Diabetes has a page on Diabetes At School. It contains links to a multitude of resources. These include sample plans and forms, legal information, SAT testing rules and advice, and links to a variety of publications and websites which also deal with this issue. Unique to Children With Diabetes is the opportunity to look at past polls, message board conversations and ask the expert results around this issue. Reading how real-life situations have been resolved can be helpful in brainstorming solutions for your own.
A common theme throughout these resources bears repeating and emphasizing. Taking the time to make sure school staff understand a bit about Type 1 Diabetes will go a long way. Educate staff about the effects and dangers of high and low blood sugars and the process of keeping them at bay. Explain, with examples if you possibly can, how diabetes has affected your child's school day in the past. Use this information as the basis for making your requests regarding how your child's diabetes is handled at school.
Our 504 process ended with a mutually agreeable plan. More importantly, it ended with our school's staff having a better understanding of Type 1 Diabetes. Most importantly, it ended with an understanding that my daughter, the school's staff, our doctors, my husband and I are a team working together to keep my daughter's diabetes from getting in the way of a good education.
CSI Summer Cottage
Setting: A vacation cottage in a quaint New England seashore village. Specifically a child's bedroom in which all surfaces are draped in white and cream colored fabric including but not limited to the bedspread, rug, doilies, armchair cover and child's shorts.
Scene 1: Mother prepares items for site change. She draws up fresh insulin, gathers supplies from a large plastic bin. Daughter assumes a position for comfortable site insertion and happily finishes a chapter of this summer's Harry Potter book.
Scene 2: Unisolve adhesive remover is applied to the old site for easy removal and IV prep to a new site area for infection-free insertion. Mother and daughter chat about the day's seashore adventures while the wipes do their trick.
Scene 3: Mother peels off the old site. Blood shoots out of it, reminiscent of a fountain. Mother screams, prompting daughter to scream. Mother lunges for tissue box across the room, hands covered in blood. She grabs a wad of tissues and presses it on to the gushing area. Daughter performs yoga moves to elevate the affected area above her heart. The bleeding slowly subsides.
Scene 4: Damage is assessed. Spots of blood are located on the white-covered chair across the room, behind the child. A pool of blood is located in the bed frame in front of the child. Spots of blood are also found in several areas of the rug, bed skirt, child's shorts and sheets. Mother wonders aloud what cottage owners would assume had happened here if the blood could not be cleaned up.
Scene 5: Mother secures paper towels and cold water. Scrubbing commences. Daughter remains in a yoga pose with fresh tissues firmly pressed to the offending area. The white arm chair cover seems most important to clean. Blood is removed with surprising ease, giving mother hope. Rug blood is scrubbed to the point of being difficult to detect. The bed frame wipes clean easily despite a surprising large puddle of blood. The bed skirt is the only remaining item not belonging to the child. This proves more difficult to clean. Mother gives up and returns her attention to the child who still needs a new site inserted.
Scene 6: A new site is inserted without incident. The old one has stopped bleeding but is covered in a band aid just in case. More cold water, then a bleach pen are applied to the bed skirt, with adequate results. Mother then repositions it so a remaining faint stain is less obvious. The sheets have blood stains already from nightime fingersticks, so mother decides they are not worth washing 2 days before vacation's end. Spattered clothing is pre-treated and put in the laundry.
Scene 7: Mother and daughter have showered and dressed in clean clothes. The family sips cocktails (and iced tea) at a semi-fancy seafood restaurant. Mother continues to wonder what a blood spatter expert would make of the scene she has just cleaned up, and how much DNA evidence she has left behind.
Scene 1: Mother prepares items for site change. She draws up fresh insulin, gathers supplies from a large plastic bin. Daughter assumes a position for comfortable site insertion and happily finishes a chapter of this summer's Harry Potter book.
Scene 2: Unisolve adhesive remover is applied to the old site for easy removal and IV prep to a new site area for infection-free insertion. Mother and daughter chat about the day's seashore adventures while the wipes do their trick.
Scene 3: Mother peels off the old site. Blood shoots out of it, reminiscent of a fountain. Mother screams, prompting daughter to scream. Mother lunges for tissue box across the room, hands covered in blood. She grabs a wad of tissues and presses it on to the gushing area. Daughter performs yoga moves to elevate the affected area above her heart. The bleeding slowly subsides.
Scene 4: Damage is assessed. Spots of blood are located on the white-covered chair across the room, behind the child. A pool of blood is located in the bed frame in front of the child. Spots of blood are also found in several areas of the rug, bed skirt, child's shorts and sheets. Mother wonders aloud what cottage owners would assume had happened here if the blood could not be cleaned up.
Scene 5: Mother secures paper towels and cold water. Scrubbing commences. Daughter remains in a yoga pose with fresh tissues firmly pressed to the offending area. The white arm chair cover seems most important to clean. Blood is removed with surprising ease, giving mother hope. Rug blood is scrubbed to the point of being difficult to detect. The bed frame wipes clean easily despite a surprising large puddle of blood. The bed skirt is the only remaining item not belonging to the child. This proves more difficult to clean. Mother gives up and returns her attention to the child who still needs a new site inserted.
Scene 6: A new site is inserted without incident. The old one has stopped bleeding but is covered in a band aid just in case. More cold water, then a bleach pen are applied to the bed skirt, with adequate results. Mother then repositions it so a remaining faint stain is less obvious. The sheets have blood stains already from nightime fingersticks, so mother decides they are not worth washing 2 days before vacation's end. Spattered clothing is pre-treated and put in the laundry.
Scene 7: Mother and daughter have showered and dressed in clean clothes. The family sips cocktails (and iced tea) at a semi-fancy seafood restaurant. Mother continues to wonder what a blood spatter expert would make of the scene she has just cleaned up, and how much DNA evidence she has left behind.
Big Numbers
I'm afraid of big numbers.
Like any person who manages or helps to manage diabetes, I'm afraid of big blood sugar numbers and big A1C numbers. Every day is a battle to keep those under an acceptable threshold. Yet those aren't the numbers to which I refer.
What I'm really afraid of are big carbohydrate numbers and big insulin bolus numbers.
My guess is that it all stems from having a child who was diagnosed as a baby. She was 13 months old. We diluted her insulin because we couldn't possibly measure the tiny amounts she needed with an ordinary syringe. Her total daily dose was about 4 units.
She didn't eat much. Breakfast was probably the biggest meal, carb-wise, coming in at a whopping 22 carbs. She'd have a quarter cup of cheerios(8), half a small pear or half a jar of baby food fruit (8) and half a cup of milk (6). Snacks were 8 grams, maybe 4 crackers or 25 goldfish.
To this day it gives me great pause to bolus for more than about 25 carbs.
I vaguely remember mentioning this to a diabetes educator once, who kindly referred to it as a 'healthy fear of insulin.' It's not all bad. I'm not prone to over-bolusing and causing severe lows.
What I am prone to is under-bolusing. The rational part of me weighs/measures/eyeballs the food and thinks '80 carbs.' Then there's a little voice which says, 'but she never eats 80 carbs.' Or 'how could that one dessert be 80 carbs?'
More and more often, I'm able to close my eyes, hold my breath, and deliver whatever crazy amount of insulin is called for. An hour or two later, I'm glad I did. Yet I never do it without trepidation.
Like any person who manages or helps to manage diabetes, I'm afraid of big blood sugar numbers and big A1C numbers. Every day is a battle to keep those under an acceptable threshold. Yet those aren't the numbers to which I refer.
What I'm really afraid of are big carbohydrate numbers and big insulin bolus numbers.
My guess is that it all stems from having a child who was diagnosed as a baby. She was 13 months old. We diluted her insulin because we couldn't possibly measure the tiny amounts she needed with an ordinary syringe. Her total daily dose was about 4 units.
She didn't eat much. Breakfast was probably the biggest meal, carb-wise, coming in at a whopping 22 carbs. She'd have a quarter cup of cheerios(8), half a small pear or half a jar of baby food fruit (8) and half a cup of milk (6). Snacks were 8 grams, maybe 4 crackers or 25 goldfish.
To this day it gives me great pause to bolus for more than about 25 carbs.
I vaguely remember mentioning this to a diabetes educator once, who kindly referred to it as a 'healthy fear of insulin.' It's not all bad. I'm not prone to over-bolusing and causing severe lows.
What I am prone to is under-bolusing. The rational part of me weighs/measures/eyeballs the food and thinks '80 carbs.' Then there's a little voice which says, 'but she never eats 80 carbs.' Or 'how could that one dessert be 80 carbs?'
More and more often, I'm able to close my eyes, hold my breath, and deliver whatever crazy amount of insulin is called for. An hour or two later, I'm glad I did. Yet I never do it without trepidation.
You Should Really Call Your Vet
Diagnosed at 13 months old, my daughter started her time with diabetes on tiny doses of insulin. The NPH was measured in half unit doses, so with the smallest insulin syringe we could measure that dose accurately. The Humalog dose was often best measured in increments of .25 or less. It was much safer and easier to prepare those doses with diluted insulin.
The pharmacy at the children's hospital diluted our first batch for us. We did some research and discovered we had what's called a 'compounding pharmacy' very close to our home.
Per Wikipedia, "Pharmaceutical compounding (done in compounding pharmacies) is the creation of a particular pharmaceutical product to fit the unique needs of a patient. To do this, compounding pharmacists combine or process appropriate ingredients using various tools. This may be done for medically necessary reasons, such as to change the form of the medication from a solid pill to a liquid, to avoid a non-essential ingredient that the patient is allergic to, or to obtain the exact dose(s) needed or deemed best of particular active pharmaceutical ingredient(s)."
Initially, this service was ideal. We got to know the head pharmacist well, and he took a shine to my daughter. The pharmacy was also a fabulous gift and card store, and had fun toys to check out while we were there.
After nearly a year of seamless insulin pick-up, the pharmacist retired. He explained that other staff members knew how to dilute the insulin and that we should have no problem.
One afternoon, I picked up my insulin and brought it home. I took it out of the box, and noticed it looked different. It was full strength Humalog. If I'd measured 5 units of that on my insulin syringe for my daughter's .5 unit dose, it would have been disastrous.
I took it back. Someone diluted it. The next time I checked before I left the store. It wasn't diluted. I pointed out the problem to the pharmacist.
"We don't ordinarly dilute insulin. You should really be having your vet do that for you."
"My vet?"
"Yeah...they do that all the time."
My daughter was next to me, holding my hand. "I've never taken my daughter to a vet before."
A blank stare.
"It's for her," glancing down at my little girl, "not a pet."
"Oh...I'm so sorry, maam."
At our next appointment, the educator taught me how to dilute my own insulin.
The pharmacy at the children's hospital diluted our first batch for us. We did some research and discovered we had what's called a 'compounding pharmacy' very close to our home.
Per Wikipedia, "Pharmaceutical compounding (done in compounding pharmacies) is the creation of a particular pharmaceutical product to fit the unique needs of a patient. To do this, compounding pharmacists combine or process appropriate ingredients using various tools. This may be done for medically necessary reasons, such as to change the form of the medication from a solid pill to a liquid, to avoid a non-essential ingredient that the patient is allergic to, or to obtain the exact dose(s) needed or deemed best of particular active pharmaceutical ingredient(s)."
Initially, this service was ideal. We got to know the head pharmacist well, and he took a shine to my daughter. The pharmacy was also a fabulous gift and card store, and had fun toys to check out while we were there.
After nearly a year of seamless insulin pick-up, the pharmacist retired. He explained that other staff members knew how to dilute the insulin and that we should have no problem.
One afternoon, I picked up my insulin and brought it home. I took it out of the box, and noticed it looked different. It was full strength Humalog. If I'd measured 5 units of that on my insulin syringe for my daughter's .5 unit dose, it would have been disastrous.
I took it back. Someone diluted it. The next time I checked before I left the store. It wasn't diluted. I pointed out the problem to the pharmacist.
"We don't ordinarly dilute insulin. You should really be having your vet do that for you."
"My vet?"
"Yeah...they do that all the time."
My daughter was next to me, holding my hand. "I've never taken my daughter to a vet before."
A blank stare.
"It's for her," glancing down at my little girl, "not a pet."
"Oh...I'm so sorry, maam."
At our next appointment, the educator taught me how to dilute my own insulin.
Everybody's Different
Sometimes I feel as though we're the only family who does not yet use a Continuous Glucose Monitoring System. Though we're inching closer.
If not, then I'm certaily the only parent of a child with diabetes who has not read and highlighted every one of Gary Schneider's books.
Unless we're battling something significant or dangerous, I don't stay up all night checking blood sugars. If my daughter's number is 200 at 2 a.m., I'll give a small correction and go back to sleep. Shhh.
Does anyone else out there feed their child (gasp!) cereal in the morning?
Are we the only family who's never been to Friends For Life?
I'm guessing I'm not alone. Everybody's different. It's what makes the world go 'round, in a general sense for sure. It's what makes the diabetes blogosphere so great too. We read eachother's opinions. Sometimes we find soulmates who are quite like us. Sometimes we get talked into trying a new tactic, or file an idea away for a particular situation. Sometimes we're left scratching our heads. But it's all good because regardless, we're made better by sharing our thoughts and ideas with eachother.
It's 'leave a comment day' in the diabetes blogosphere. If you identify with any of the above, leave a comment and let me know I'm not alone. If you think I'd be better off for changing my ways, let me know that too. I know you'll be nice about it. Or do you have thoughts about how our differences make the blogging world better? Or if that's all too much, just tell me your favorite summer beverage...that's easy, no? Whatever it is, bring it on. I'm looking forward to reading your thoughts!
An Ice Cream-Free Heat Wave
It's been HOT here for a week and we're reaching the end of our list of coping mechanisms. The town pool has gone from refreshing to soupy. The mall was fun once. We finished the jigsaw puzzle. We read entire books during our visit to the library.
Food-wise, we've grilled and crock-potted. We've enjoyed salads, partly from our little garden, and we've consumed lots of summer fruits. The slushie magic I picked up at a steep discount as a site change prize incentive has seen a lot of action.
Frozen fruit bars and even mediocre popsicles made from low-carb gatorade have made refreshing treats. Yet what would really taste good is a nice cone of ice cream.
Sadly, that's where we've hit a dead end. My daughter's lactose intolerance has chosen now to flare up.
With good reason, I guess. We were traveling the weekend before last, and didn't put the pieces together until it was too late. The day started with cereal with regular milk. Lunch was a bowl of new england clam chowder (her favorite). Dinner was pizza. Despite the little lactaid tablets, this was too much for her system. It was way more than the one or two small servings per day she was used to.
The dairy binge was followed by several days of feeling decidedly awful and subsequent days worrying about whether the discomfort had gone away for good.
She went at least a week completely dairy free. She's since had a sprinkle of cheese on a taco and a couple of other negligible bits of dairy products. Yet she's (understandably) nervous about trying anything more yet.
So we're sampling treats like sorbet in ice cream cones (really, really sticky), and almond milk smoothies ("whatever you put almond milk in, the whole thing just tastes like almond milk").
I'm not much of a complainer, or dweller on negative things. But a heat wave without an ice cream cone outing is making me a little sad.
Since I feel compelled to find a bright side, not dealing with ice-cream's all night blood sugar revenge is a huge plus. While a sweet sorbet will cause a spike, it gets itself out of the way pretty quickly.
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