Monthly Archives: September 2006

More on celiac disease — how we got diagnosed.

I blogged earlier today about my views on celiac disease.

Until fairly recently, it was thought that celiac disease was an extremely rare disease, affecting about 1 in 10,000.  But recent studies have shown that, in the US, somewhere between 1 in 133 to 1 in 250 have celiac disease.  Right now, though, the dx rate is showing 1 in 4000 w/ CD, meaning that it is *severely* under-diagnosed.  (Right now, Italy leads the world in diagnoses, because each child entering Kindergarten is required to be tested.  So, oddly enough, the country known ’round the world for its wheat pasta is becoming the most aware of celiac disease in the world, and makes me think that it would be a pretty celiac-friendly place to travel.)

My many personal thanks to Dr. Alessio Fasano, who came out with a huge study in 2003, showing CD to be much more prevalent than originally thought.  The word is still getting out, more than three years later, but that study led to celiac disease at least being on the radar.  Most doctors have at least heard of it now, and have a general understanding of what it’s about, and about how serious it is.

But… at the time that we were going through our own journey to diagnosis, the study wasn’t yet published, and most doctors had not even heard of celiac disease.

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Celiac Disease — Don’t be afraid of a diagnosis!!!!

I have a lot of people stumble upon my blog looking for info about celiac disease.  So, I thought I’d post about our nearly four-year “adventure” with the disease.

I’ll probably post several times about this, until I’m talked out.  😀

First, you should know that it is an autoimmune disorder (where the body attacks itself), with a known “trigger,” and that trigger is an amino-acid-like bit in the gluten protein called gliadin.  The short story is that gliadin triggers a self-destruct response in the small intestine *and* it bonds to nerve cells in the brain and acts as an opiate.  The most common symptoms are digestive problems (especially diarrhea) and depression.  There’s also a skin disorder unique to celiac patients called dermatitis herpetiformis.  But, every patient presents differently, with slightly different symptoms, so it can be difficult to diagnose.  For my son Wesley, it took 7 months, which felt like forever.  It took an interim diagnosis of “failure to thrive” which is what neglected crack babies get dx’ed as, and is *NOT* a good thing to get labelled as for his doctors to give ear to my concerns about my son.  In the end, *THEY* didn’t find celiac disease, *I* did, but I’ll save that for another post.

Gluten is the protein found in wheat, rye & barley (and slightly differently, in oats, but oats triggers a similar response in most celiacs).  The only intervention for celiac disease is to go on a COMPLETELY gluten-free diet.  1/8 of a gram of wheat flour (a gram is about the size of a raisin) contains enough gluten to make an adult’s symptoms worse.  It’s that sensitive.

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K & 2 Homeschool Schedule — weeks 5-8 PDF

K & 2 Homeschooling Schedule — weeks 5-8

Here is the next round: weeks 5-8 of the homeschooling schedule of Grant (grade 2) and Wes (K).

(Here is the first four weeks:  K & 2 Homeschooling Schedule (1st 4 Weeks) )

They also do Sonlight’s Core 2, which covers History, Readers, Read-Alouds and Bible/Devotions.  Grant does all of it, and Wes sits for some of the reading. 

Wes already reads quite well, but has learned predominantly w/o my instruction, and by “sight.”  I decided to have us go through 100 Easy Lessons, which has proven to be a good decision;  he is now grasping the idea of sounding a word out.  He is very eager to learn, so for this quarter, I have scheduled two lessons a day.  We’ll see how that works.

Wes is still not solid on basic pencil skills, so I’m going to wait at least another four weeks before we introduce any phonics or math workbooks.

Grant is in 2nd grade, but due to his Nonverbal Learning Disorder, which effects both fine & gross motor skills, much of his 1st grade year was spent on writing & motor skills, in conjunction with occupational therapy.  So, he is behind on Language Arts/Grammar, although his reading and spelling skills are through the roof (well, about 5th grade level for both).  So, Grant is doing FLL with Wes, both on the 1st grade level.  I’m also having him start Miquon Orange, which is 1st grade level, b/c Miquon is solid on its mental math, and “thinking outside the box.”  Singapore is good at enforcing mental math skills, but their “boxes” are extremely well-defined;  they want each student to think the Singapore way only, while Miquon encourages the student to figure out problems in any way that makes sense to them.  I’d like Grant to have a balance of both.

NR2 = Christian Liberty Nature Reader 2
Sing 2A = Singapore (Primary Mathematics) Book 2A
Miq. Ornge = Miquon Math Orange Book
ETC 4 = Explode the Code Book 4
100 EZ Lessons = Teach Your Child to Read in 100 Easy Lessons
Copywork = Queen Homeschool’s Copywork for Little Boys

Ethan’s 4th Grade Schedule PDF — Weeks 5-8

 Fourth Grade Homeschool Schedule, Weeks 5-8

Here is the next installment of Ethan’s 4th grade schedule. It doesn’t include History, Reading, Read-Alouds and Devotions/Bible Reading, which is covered in Sonlight Core 2 (we do 5-day with Advanced Readers).

We keep our Fridays open for science projects, trips to the library, our nature outings, trips to the park, and sometimes, just catching up on the week’s undone things.

On the PDF: 

Journal = From Heart to Page idea booklet
Typing = Type It!
Handwriting = A Reason for Handwriting Cursive
NR4 = Christian Liberty Nature Reader Book 4
Sing 4A = Singapore Math/Primary Mathematics 4A
R&S Eng = Rod & Staff Building With Diligence English 4
R&S Reader = Rod & Staff Exploring With God (Bible Nurture and Reader Series)
Latin = Latina Christiana Book 1
Spelling = Spelling Power

I’m also using some supplementary multiplication worksheets, since it’s become apparent that E doesn’t really have his “times table” memorized.  I created some here. 

The Effective Prophet

I remember a conversation I had with a friend, oh, about 13 years ago, about communication.  I was bemoaning the fact that the English language, in all its beauty, is under-used.  I was intent on using it more completely, and was making efforts to increase my vocabulary.  I had been spending time looking for words that aptly expressed exactly what I was trying to say, and often, those were “fifty-cent” words, as one of my English teachers used to say.  I had a problem, though, with all the dumb people out in the world who didn’t understand me.  (I hope you’re rolling your eyes at me.  😀 )

This friend that I was talking to is the most exact user of English that I know.  He is very careful with his speech, and he listens thoroughly to what is said.  He has an immense working vocabulary, and I thought that surely he’d lend me an ear that was sympathetic to my plight.

But he responded, “But isn’t the purpose of communication to communicate?”

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The Row is Resolved :)

(Pronunciation Key)

row3 Listen: [ rou ]
n.

  1. A boisterous disturbance or quarrel; a brawl. See Synonyms at brawl.
  2. An uproar; a great noise.

Well, after some a flurry of e-mails, some very long, some very short, the row with my dear sister is resolved.  There were some misunderstandings, some hurt feelings, some core value differences, but in the end, the good news is that we love each other.  🙂

Driving to kinship (a home-group/Bible study) last night — only the 2nd time Audrey’s been babysat, and the first time was by my Mom & Stepdad — my dh & I were talking the whole thing over.  I told him that what I believed the Holy Spirit had brought to my mind was some teaching I’d heard once by John Paul Jackson, about how to handle accusation.  He said that even if the accusation is way off-base to ask yourself, “What part did I play in this?  What, in my behavior, led this person to even think that this was possible about me?”  And, it’s funny (funny-ironic, not funny-haha), b/c at that point, I had no idea what my sister was upset about, but was sort of guessing.  Well, my guess proved to be not what she was concerned about.  But, in my attempts to right any wrong I had done, the wrong that I thought she was holding against me, I was prompted to contact the rest of my family.  That, in turn, has led to some really good conversation between myself and each of them:  some checking in, some updating, some “I love you”s, some deep-heart divulgence, some trip-planning… just good stuff, all around.

Here’s what my older brother said about our family, specifically, the four of us sibs…

I think something in our upbringing made us more self-reliant than most.  Perhaps it was the real or perceived distance of parent/s we learned to get by without, and now that we have dealt with the baggage, finding our various levels of success with that, we find ourselves still loving our family but not being closely tied to them.  As this is not societal norm, there are plenty of chances for guilt to slip in.  Don’t let it.

He’s right — we have a pretty low-maintainance family, and sometimes weeks or months will slide by w/o contact, and that’s *not* the societal norm of a healthy family.  But, by and large, it works well for us.

It would be better, though, for me to work harder on keeping real communication lines open wider, and more frequently.  I think — althought this turned out to not be “the” issue w/ my sister — I have leaned too heavily upon the grace that I knew she would extend to me when I let the priority of contacting her slip down lower and lower on my “To Do” list.  Same w/ the rest of my sibs, and my dad.  (Not my mom;  I see her nearly every week.) 

ANYways…  I’m glad the whole thing is resolved, and glad the love is restored, and I’m glad for the family I have, odd though we may be. 

Chavez is an idiot

Hugo Chavez is a deluded fraud of a leader, basically Cuba-izing Venezuela.  Given Bush’s low popularity ratings these days, he surely thought that he would find willing ears in the land of the free and the home of the brave, open to his Bush-bashing ways.  But, I’m guessing that he never would have guessed, in a million years, how his accusations would backfire.

Rangel and Pelosi rallying ’round the President?  Priceless.

On empathy and its absence…

empathy

One entry found for empathy.

Main Entry: em·pa·thy
Pronunciation: 'em-p&-thE
Function: noun
Etymology: Greek empatheia, literally, passion, from empathEs emotional, from em- + pathos feelings, emotion — more at PATHOS
1 : the imaginative projection of a subjective state into an object so that the object appears to be infused with it
2 : the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also : the capacity for this

I have never been empathic/empathetic.  I’m missing that natural bone in my body.  That has, at times, been a savior to me, bringing blissful unawareness, protecting me from the ravages of peer-pressure (since I didn’t care what anyone else was doing), and protected me from the ill will of others, which I *VERY* rarely perceive.

However, it can get me in a world of hurt, too, b/c … well, people like you to just “know” what is going on with them, and why they might be hurt by something you have done.  But, unless I have the tool, the key to understanding, I’m probably not going to be inherently empathetic to a person or a cause.

That’s why Meyers-Briggs and their work was such a revelation to me, when I first found out about it, about 9 years ago.  I used to think that, basically, people were just like me, except that folks had varying levels of intelligence, and different experience.  It was *NEWS* to me that people perceive, process, communicate and value all sorts of things differently than others.  Having this tool saved my marriage (really), and in many ways, kept me from going crazy regarding my own self.

(BTW, I’m an ISTJ, but not as responsible a one as described on the above link.) I am now in the midst of a… thing with my sister.  I had *NO IDEA* she was upset at me, and even with continuing e-mail exchange (I tried to call her, left a message, but she e-mailed me back.  That’s OK.), I’m still completely clueless why she’s upset, and the thing that is troubling to me is that this has apparently, unbeknownst to me, been festering for quite some time.  We even had — what I thought — was a GREAT phone conversation about 10 days ago.

Here’s my most recent reply to her:

I’m sorry (truly), but I’m really lost.  I will heartily admit that I am one-dimensional, and I do not have a naturally empathic bone in my body.  So, help me!  I really do want to understand the perspective that you’ve adamantly stated that I’m missing.  I need tools and explanation.  I’ve really never been any good at just figuring it out. 

I am *loathe* to hurt or alienate any of our family.  But, I am completely relationally dense in the regard of that, when I’ve hurt some one, I need them to tell me, “You’ve hurt me, and here’s how.  Here’s why that hurts.” 

If you just keep telling me I’m dense and one-dimensional, and that I need to see from a different perspective, I can AGREE with you, but it still won’t help the situation.

So, I need your step-by-step.  I’m sorry if that’s frustrating to you, and I’m sorry that I haven’t just “gotten” it on my own, you know, percieved what is happening and done something about it.  I’m just *not* perceptive, and I need your bluntness and exactness about what, exactly, the problem is.

If it’s just that you can’t stand my one-dimensional personality, but you have no tools to help me fix that, then…. well, I’m HONESTLY sorry, but I can’t do anything about that, short of some sort of prophetic insight or revelation.  I really, honestly, completely don’t have a clue.

This all has made me very, very sad.  I’m not angry, I’m not offended, I’m just sad, and feeling very helpless.  😦

The Verde River/Rio Verde Adventure

(Edited 6/29/07 to remove some pictures because too many sicko pedophiles are finding my blog to peep at boys in a river.  NONE of my pics were immodest, but I’m removing a couple that might even slightly be viewed inappropriately.)  

Friday last week, Sept 15, I took the kids on another nature outing.  Similar to our last event, we had three objectives:

  1. To play in nature — as in the “loose parts” unstructured play in natural settings, as described by Richard Louv in Last Child in the Woods.
  2. To identify, pick and press whatever wildflowers we find, adding them to a planned year-long collection.
  3. To participate in a small nature-studies project for each outing.

The last outing was somewhat, uh, too unstructured, and since I forgot a hat for Audrey, and it was quite warm, she and I stayed in the truck for most of the day, and I wasn’t able to supervise them on their project, so we re-did it.

Someone asked me how I find places to go.  Here’s what I told her: 

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“Tutor toddlers with hugs”

Last night, I had David Letterman on as I was folding laundry.  I wasn’t really paying full attention, but it did pique my interest when he started speaking of his not-quite 3yo son (who is SO cute) “having” to go to preschool.  Dave was asking Paul, “Does he have to go???”  And, of course, I start talking to the screen, angsting to Dave that he does NOT have to put his dear little boy into preschool, even if that’s what all the neighbors are doing.

It just seems abundantly apparent to me that the best place for a child, especially a small child, is HOME.  Whatever that little child needs, they can best get it from the people who love them best, and who are MOST out for their best interests, and those people are The Mom and The Dad.

Then, today, from Sunday’s newspaper, I see this bit that is in the USA Weekend “magazine” section, written by Ann Pleshette Murphy in their ParentSmart column:

  Tutor toddlers with hugs

A surge in pricey tutoring programs for the pre-kindergarten set makes you wonder: Are they worth it?

“We know from decades of research that children learn best through their everyday experiences with the people they know, trust and love, not in structured environments where they are pressured to perform,” says Matthew Melmed, executive director of Zero to Three, which promotes youngsters’ well-being. He stresses the critical connection between a child’s emotional and social development and his ability to learn.

To boost love of learning:

  • Think fun, not flashcards. Cuddles and hugs are just as important to your toddler’s brain development as words on a page.
  • Teach as you play. At the playground, talk about “in and out,” “up and down.” Use the sandbox to introduce quantities and counting.
  • Make music together. Singing and dancing both build creativity and language skills. 

Thank God for Matthew Melmed, and others like him, who are seeing that the early-to-school movement needs to die a swift death in our country.  

Sort of OT, but my son Grant sees a developmental pediatrician at the Melmed Center, which is headed by Raun Melmed.  I wonder if Matthew and Raun are related…  

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