Wednesday, June 17, 2015

Making the Grade

At the end of the semester, I received my report card and was incensed.  My high school math teacher had given me a 99% in Geometry.  I had not missed one question on any homework or any test all year.  I had the papers to prove that I had 100% and offered to show them to her.  Her response?  She had to give me a 99% because I could not possibly know everything there was to know about Geometry.  My response was that I knew 100% of everything she had taught.  Being a powerless student, I had to accept defeat, but she knew I knew.  I still know, and if I could only remember her name....

Funny, here I am in my 50s and I still remember that and feel slighted. But my grades, that was a way to prove that I knew the material, and a comparison to others of how I was doing.  Silly really, because I loved Geometry and knew that I had learned the material.  I didn't need a teacher to tell me.  Intrinsic learning or learning for the joy of it was there, but I was raised in a graded culture and I wanted that proof that I knew my stuff.  

But what if students didn't get grades but learned as part of life?  What if knowing you were growing and learning was enough?  Would you be willing to send your child to a school that didn't grade? It is possible to be schooled through high school without grading in comparison to other students and to go on to and graduate from college.  My two daughters did it.

The A1C test, the average blood glucose over the past three months, is a number held as a type of grade of BG control by doctors, parents, and patients alike.  Every three months we present our devices, the office downloads the data, and looks at the A1C, our report card.  But, it tells such a limited story and is held up for admiration or hidden from others in fear of judgement,   It is shown as a badge by some - "Look, I've reduced my (child's) A1C. Look how low it is.  Look at the good job I'm doing".  Why do we feel the need to compare ourselves to others?  We are all doing the best we can day by day.   We know how we are doing.  I am shooting for near normal BG for my son, and some days, I don't get close.  I try again tomorrow.  

In the book, Sugar Surfing, Dr. Ponder talks about his early management of T1D and that instead of a number, there was a color chart, each color signifying a range of A1C.  I wonder if that wasn't a healthier way to communicate control.  Obsessing over 0.2 or 0.4% change when there is a range of error permitted of 0.5%? Reigning in the competitiveness by saying you're somewhere in the blue might be more supportive.

I'll admit that ditching a grading system would be hard for me.  I know that the standard deviation, the range of numbers, is as important if not more so than the A1C. Yet, I know that when I go to the doctor, I'll wait nervously for that number, unable to shake that feeling that it will define our dedication.  I'm still waiting for that 100%.  

Notes:  I will never adjust to the need for one space after the period.  I learned on a typewriter from a book in the dark ages.  (Monks sat next to me hand lettering.)  Now, I must go back to adjust spacing each time publish a blog because I put in two spaces where there should be one. It is automatic.

A fluffy, mangy, red cat is hanging out in our barn.  Anna says he looks too thin.  I can't catch him. Don't want another cat, don't want him to starve.  

Sugar Surfing

It's a bit like flying to me, or maybe riding a roller coaster. The difference is that every once in awhile, someone switches the track without telling you.  Your body is leaning the left but you go right.  Sometimes, the roller coaster stalls at the top of the hill, doesn't move and you just sit there, a little nervous for hours, wondering how the employees are going to get you down.  Sometimes, if you are paying close attention, maybe sitting near the front, you see it coming and can adjust.  On good days, you go up and down, moving with the train. Gliding.

A Continuous Glucose Monitor (CGM) helps us see those track changes coming.  We still have a few highs and lows, but less, and with more control.  Over the past few weeks, his BG averages a normal, non-T1D blood sugar.  We were already employing some of the methods described in Dr. Stephen Ponder's new book, "Sugar Surfing", describing using a CGM to attain better BG control but this book answered many of the questions I had and gave me more confidence to add insulin in to ward off a track change or worse, jumping off the track altogether.



Throwing away the fear is the most difficult part of parenting and treating a child with T1D. There is the certain knowledge that you are giving a drug that can seriously harm if not kill them.  I have been hearing people in the DOC (Diabetic Online Community), reading blogs like Arden's Day and SixUntilMe, and hearing the message, "Be Not Afraid". You hear many scary stories, many and it does happen.  More frequently, many T1D live long and productive lives and focusing there seems more psychologically healthy.

This book, while we wait for the ride to end with a cure, shows how to move from a static management of T1D to a more dynamic management.  I've heard of medical professionals say that such focus isn't healthy, that one has to "live one's life".  I don't think we look at our CGM any more than people today check their cell phones, probably less.  And, William is paying more attention, making more decisions, and becoming more confident in those decisions.  "I'm just surfing, Mom," he'll say.  The only caution I have is that at his adolescent age, his mind often loses focus and he forgets to check or correct.  That's where I come in.

BUY THIS BOOK!

Yesterday, I wrote that this book not only made me think differently about diabetes management, but also about how we grade and categorize starting early in childhood.  Because this post is getting long, and William is at BG 81 and great time for breakfast, I'm putting that thought off until tomorrow.

Note:  I know some insurance and Medicaid doesn't cover CGMs.  This needs to change.  They'll pay for those little blue pills but a device that keeps your child safe at night, reduces long term complications, no way.  Not medically necessary.  Makes me want to become a CGM lobby!

Monday, June 15, 2015

Making the Grade

"The measure of intelligence is the ability to change." - Albert Einstein


School taught me early on that grades were the pinnacle, the utmost important goal in that phase of my life.  Somewhere along my education, my self-esteem was woven tightly with my grade point average.  My intellect was judged with a letter.  Education was not just learning, it was a competition, it was proof that I had worked hard, and it was status.  In college, bell curves determined not what I learned or needed to, but how I compared to the others in my class.

It was a paradigm shift then for me when I began homeschooling the girls and was confronted with the requirement (in Kentucky) to keep grades:

The private and parochial schools shall record and maintain scholarship reports of each student's progress at the same interval as in the local public school, grading all subjects taught. (KRS 159.040)

A grade, by definition, is a ranking or sorting of the intensity, quality, etc. of the work - compared to others in the same study at the same time.  It quantifies how one is doing in relation to one's peers and serves as a way to communicate to parents and others involved in the child's welfare the progress of that child in relation to potential.  In a school, it serves a purpose.  When you are both teacher and parent, however, you know exactly the progress or lack thereof.  A grade begins to lose meaning when your goal is to instill instead a lifetime curiosity and love of learning and when it isn't needed to sort a group of students.



My new "grade" or report card is my son's A1C result.  I fight with myself to not see it this way, but I have read enough to know that many if not most parents of children with Type 1 Diabetes, and some doctors,  use that single number to judge how they are doing in the management of blood glucose. The A1C gives an approximation of the average blood glucose of the patient over the past three months.  If you don't have diabetes, it is likely your A1C is between 4 and 5.6%.  At 5.7%, you are considered at risk for diabetes.  The goal for someone my son's age is purported to be under 7%, and in adolescence, that can be a lofty goal.

As with homeschooling, time is shifting my perspective.  Each day, I know how my son is doing, as does he.  We have great days, we have shitty days.  We have pump failures, we have sensors that last two weeks instead of one.  We have nights of highs, lows, and perfect BG 85 all night.  We know how we are doing. Each mistake is an opportunity to learn.  Like algebra, our skill set increases which makes us faster and better problem solvers.  And, I don't care what our A1C is.

I know, overall, it has dropped.  How much?  Who cares?  What am I going to do with that single number?  Tell you that I've helped William manage better than that or this child? Tell you we've improved our management?  Interweave that number with our self-esteem?  Let you use it to judge us?  This is dangerous, I contend, because in life, there are ups and downs (literally, in our case) and circumstances within and out of our control will blow that A1C around like a toy boat on a lake.


Like homeschooling, diabetes management is really about lifestyle choices which take faith that long term, the results will be positive. So, why all this long winded dialogue comparing A1C with being graded?  I'm reading Dr. Stephen Ponder's book Sugar Surfing which I highly recommend and listening to some of his interviews.  He has made me think about this A1C business.  Tomorrow, I'm going to write about how I think a change should be made in supporting patients and caregivers of those with Type 1 Diabetes and a healthier way to communicate.

While you're waiting, go buy his book for your favorite person with T1D.  You (and they) won't be sorry.

Tuesday, June 09, 2015

Most Bizarre: Probiotics or I am My Own Universe

Most of us really don't want to think of all the invisible creatures living in or on our bodies.  Just thinking about eyebrow mites makes me itch and now I've gone and made you itchy, too. My most recent study for improving William's management of Type 1 Diabetes led me to a doctor that recommended probiotics.  Most of us can get these little creatures in our diet, for example in a good yogurt, but this doctor felt William needed additional support.  I'm a crunchy, Wholly Foods, essential oils skeptic by nature, but I was willing to try.

We added the single capsule at dinner.  For the first few days, he went low and required many carbs to counteract the lows.  This appeared to be due to the carbs not being properly absorbed and the gut more or less flushing the carbs through. (If you catch my drift.  If I am more explicit, my son will stone me if ever he finds I wrote a blog about him.  He's likely to anyway.)  This resolved itself.

I decided to move the administration of it to breakfast, which resulted in the need for a science experiment.  Yesterday, with a morning blood glucose of 80 mg/dL, I told him he could have cereal. If you know someone with T1D, you will know that cereal is "flight attendants:  prepare for take-off". Double arrows up on the CGM and if you don't catch it, BG ends up in the clouds (200 or greater). Cow's milk and Chocolate Cheerios (30 grams) was the easiest, and we experimented with 50% basal increases which helped but still often went up to 200 mg/dL.

To avoid gluten and cassein (our new thing since having T1D isn't inconvenient enough), we've changed to Chocolate Rice Chex and almond milk, and the probiotic.  Two hours later, he was at a normal BG, in fact I had to give him a temporary basal reduction and half a banana so that he could hit golf balls. Then, my daughter texted me - I'd given him the wrong almond milk and under-bolused 14 carbs!  Couldn't be, he'd have gone up another 50 or 60 mg/dL.   He had peaked at 140.  I shook my head unable to understand it.  

Today, I repeated the exact same scenario (minus the golf).  Same pre-bolus, BG at 77, 30 carbs for the cereal but didn't count the 14 for sweetened almond milk.  He peaked at 150 and was at normal 100 mg/dL for lunch.  Under bolused, 14 carbs.  Didn't spike.  Probiotic?  It is Monday?  He's in puberty?  The CGM is messing with me?  Is this a good thing?

Disclaimer:  As with anything on this blog, nothing I write is intended as medical advice. Consult with your doctor before changing your treatment and health choices.



Thursday, May 28, 2015

Freezer Jam

When the girls were young, strawberry picking season was much anticipated.  William is happy that my friend, Becky, dropped off a flat of them picked that morning by someone else! Manipulating virtual robots on his computer screen draws his attention much more than squatting in a field looking for ripe berries.

Freezer jam is a tradition, passed to me from my mother-in-law.  The intense strawberry flavor, particularly in the winter, makes your mouth tingle. The berries Becky brought were small, very red, and loaded with flavors and aroma.  These were locally grown and the horse apples they try to pass off as strawberries at StuffMart can't compare.

Freezer jam is so easy and quick to make, yet traditionally, it is loaded with sugar.  Looking for a way to reduce the carbs and sugar for a jam lover with Type 1 Diabetes, I could only find a few recipes, but most were for cooked varieties and in my opinion, cooking lessens the intense flavor. So, I made my own.  It turned out fabulous.  Here's how:


Clean the strawberries and remove the leaves and hull.  Put a layer of them in a large bowl and mash with a potato masher until there are no large chunks but bits of strawberries are visible.  If you have a boy helping you do this, be sure to show the technique of gently pushing down with the masher rather than banging the strawberries like with a hammer. Either that or change your white shirt before proceeding.  Make four cups of mashed strawberries.



In a saucepan, combine one box of Sure Jell No Sugar Needed with 1.5 cups of sugar substitute.  Mix well. Add one cup of cold water and stir until there are no lumps.  Bring this mixture to a boil and boil for one minute.  Stir the hot mixture directly into the mashed strawberries.  Stir until well blended.  Transfer the mixture into clean jars and put the lids on.  Let sit overnight to gel and then put in the freezer.  


My preliminary estimation is that there are 2 grams carbohydrate per tablespoon.  I believe with sugar it would be about 6 grams carbs per tablespoon.  It set well with the caveat that freezer jam is not like cooked jelly, but is a thick mixture.  It tastes really good on fresh baked bread or for those of you watching the gluten and carbs, on Fage yogurt.  

Tuesday, May 26, 2015

I Don't Care Who You Are, That's Punny!

Most people moan at my puns.  Inherited from my father, it seems one daughter, a niece, and perhaps my son enjoy a word play here and there. This calls for an example.  We were traveling through our small town and passed by an attorney's office. My daughter remarked on the man's first name, "Beach". Who would name their son "Beach"? she wondered aloud.  As we crossed over the railroad tracks, she turned and said she hoped he didn't have a son because then he would be a "son of a Beach".

Later, at dinner, I handed William a banana in the peel.  Too strict about carb counting, I like to peel it, weigh it on a scale that calculates carbs, and give him the peeled banana in a bowl.  He hates that. He wants to eat his banana like a monkey from the peel.  (At least the monkey in the old Curious George books, I'm guessing.)  Anna and I both remarked that we were not sure why that was so appealing.  My husband found the joke to be in bad taste.  

Speaking of monkeys, or rather apes, we visited Jelani, a gorilla who lives with the bachelors at the Louisville Zoo.  One day a while back, we met an older woman who had a Louisville Zoo magazine and she was showing Jelani photos in it.  He would bang on the glass to get her to turn the page. That intrigued me, so I loaded up our iPad with photos of gorillas from the web and headed back to the zoo. When he sees us on visits, we hold up the iPad and he comes right over.  He looks intently at the photos, especially those containing baby gorillas, and raps the window with his knuckles when he wants to move on to the next photo.

Jelani and William looking at the iPad
As you can imagine, this gathers a small crowd of people who say they can't believe how smart he is. Really?  It makes me sad that he is so intelligent, and so confined.  I would go very often if I lived closer, but it was time to leave.  He touched his nose, then his mouth, then rapped his knuckles twice. He repeated the sequence.  It was not a random gesture, he was asking for more. If you have an iPad and can load it with some photos when you visit our zoo, you will find it a unique bonding experience with a gorilla.  I would like to see this catch on as a fun thing to do just so Jelani gets more screen time.  



Monday, May 25, 2015

Unwanted Publicity

We hadn't seen each other in some time, so it was natural for her to ask, "Are you still homeschooling?' When I affirmed that yes, I was still homeschooling William, she got a mischievous look on her face and said playfully, "Well, you know that's becoming rather shady these days."  She laughed out loud. I was reminded why I don't socialize much except with close friends.

I grimaced in the approximation of a smile.  "I'm aware," I said, "but those cases aren't about homeschooling.  I think they're about entirely different issues."  Fortunately, she dropped the subject and moved on.  In just a few short weeks, the media has focused on sexual molestation within two homeschooling families and on one family that lives in conditions less favorable than the horses and feral cats in my barn.  Because the three families "homeschool", this gleefully stirs up the mainstream to wallow in our weirdness. Because abuse never happens to children that attend school.  (Sarcasm alert.)  

Earlier in the week, I attended a volunteer meeting.  I was new there, a stranger among people acquainted with each other.  They were very nice, but of course, the inevitable question arises, "Where does your child go to school?" Now, you might think it a mild and safe question, but much can be read into the answer.  Perhaps your child attends Namebrand Country Day or St. Money in the Fields. Wealth drips from your answer. Perhaps a public school?  But if it is north, south, or in the middle of the county? Inferences can be made.  Perhaps a magnet school or parochial?  Lots of information there.  But no, I answer, "I homeschool."

"Oh."  the woman next to me pauses.  (I've never heard this before.) "You must have a lot of patience to homeschool.  I could NEVER do that."  I smile.  It reminds me of the time someone that said they could not homeschool because her children didn't listen to her.  I retorted that perhaps her children didn't listen to her because she didn't homeschool.  (She did end up homeschooling a year or two later.)

Back to the conversation.  I explained that I had always homeschooled, so I grew in my abilities to teach as they grew older.  I didn't just pop into the job.  Mindful to listen back, I asked what she did.

"I teach kindergarten."  
So, she thought managing a class of five year olds was easier than teaching one boy?  "You are the patient one," I said, "managing thirty students.  I have only one."
"I only have twenty," she replied.  Twenty.  I have one, that I love like he is my own.  Oh, wait, he is.

I used to say that homeschooling was an act of faith, because you wouldn't know if you'd done a good job until they were beyond your influence, and then, it was too late.  You had to keep going with no reassurance that you were doing it right and with no one outside the family to blame.  I can report back that the two that are "finished" are the most educated and lifetime learners of most all people I know.  Aside from that, they are strong in family values, love with their whole hearts and are good people. Both graduated with honors from college.  So, as you see the Jerry Springer stories pop up on the news feed, remember that they are feeding you this for the drama.  

Notes:
  • Dear Mrs. Cardinal, building your nest in a low lying burning bush outside of the window where my cats perch inside on their cat tree?  Not a good idea.
  • Lots of people are getting chickens these days.  Been there, done that.
  • The house on the corner sold.  There are four feral cats in the barn that the Humane Society and I have been feeding for two and one half years.  They want them gone.  Yesterday.  

Friday, May 22, 2015

I Don't Think I Signed Up for This Time Slot

"I just want to be like everyone else!" he emoted.  That is, like everyone else that has an iPhone (preferably 5 or higher) and plays Halo.  Not as in "I have diabetes and want to be like everyone else".  It was a bittersweet moment.  He did not see diabetes as keeping him from being "normal", rather he lamented that  he had (I quote) "smart parents" that are aware of the leading research on social media and violent video games.

Being like everyone else is doable, I said and picked up the phone. Who was I calling? Why, the public school of course because "everyone else" catches the 6:30 a.m. bus that rolls past our place and they go to school all day.  (Yes, we homeschoolers do sometimes use the "I'm going to send you off to school threat".)  You see, it's just that I don't understand.

Would you, I ask, play a game in which you grabbed kittens and twisted their necks until they snapped, killing them.  He turned his head, thinking.  Was this a trick question?  Of course not, he would not.  But yet, it is okay to play games in which you shoot people dead.  (See, it was a trick question.)

This haranguing of the parents over movie and video game ratings, over the usage in time of electronics, of not wanting to leave one's chair at least once an hour to stretch and blink one's eyelids, it goes on and on. The idea, I think, is that if he can keep it up long enough, he thinks he can wear us down. And you know?  He's right. Eventually, he will have Halo as he gets older, he will have an iPhone.  We're only buying time.

I sound desperately old as I tell him of my childhood where parents would have laughed to hear that you wanted them to pay monthly for a data plan, that you needed, oh desperately neeeeeeded certain things.   When my girls were young, I didn't let them watch Power Rangers, for goodness sakes, because they kicked people!  We didn't have cable and computers ran on disks.

Since there is no going back, we negotiate.  Boys are very good negotiators.  I'm thinking we might have a  lawyer in the family one day.

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