Delayed food allergy testing, before and after photos

I am prompted by a discussion on a Yahoo group to post some before and after photos of my daughter. I sometimes post photos of her, simply skim my archives to see her now.

Our GFCF diet anniversary is next week: EIGHT years. We slid for several years, staying *mostly* GFCF, but using digestive enzymes to allow occasional, deliberate infractions for pizza or a sandwich on wheat bread. We've struggled on-and-off w/ eczema. I have it, too. The eczema became a family member for a while, and I wasn't sure what was contributing to it. My baby girl's face showed evidence that something was affecting her skin, but what? (Double click on the photos below for a close-up of the rash on her face.)

A "Food-Specific IgG Antibody Assessment" from US BioTek Laboratories revealed delayed food allergies to gluten, casein, soy, and several other foods, including pineapple. When we saw the lab results, we immediately returned to strict GFCF again, also removing soy. We switched to a pineapple-free enzyme, too.

My daughter's skin improved within a few days of changing the diet. I thought you might like to see the photos.

About two months after we returned to a strict GFCF diet plus soy free and a few other foods, my daughter ate a slice of pizza. I caught her with the crust in her hand. Wheat, milk (mozarrella was one of the biggies on her delayed food allergy test), and probably soy were in that slice. I gave her digestive enzymes (a bromelain-free enzyme) and crossed my fingers, hoped for the best. For two days, I saw no changes. On the third day, she was veeeeery easily frustrated, screeching more protests at me, resisting joining me in anything. On the fourth day after the dietary infraction, she was much worse, behaviorally, melting down (or as HANDLE says, "flaring up") with self-regulation decreasing. US Biotek's paperwork says that the delayed food allergy REACTION can be observed up to FOUR days later. Well, guess what? On the FIFTH day, the eczema returned to her face and legs.The pizza infraction was an eye opener for me. Having her at home with me in a homeschool setting has allowed me to see a lot more. I was missing a lot when she was in public school.

When we saw our DAN! doctor again in person several months later (we were there for one of many strep tests), he walked into the exam room and stopped in his tracks, his jaw dropped for a moment, and he turned his whole body around to look at me, asking with loud excitement, "WHAT DID YOU DO???? WHAT DID YOU DO????" I was caught off guard -- I had no idea what he was referring to (we had not seen him in a few months and I had forgotten that he had not yet witnessed the improvement in the eczema). He was amazed that we were not using any cream or ointment or anything on it. We just changed her diet.

Here's a BEFORE food allergy testing revealed some delayed food allergies that we didn't know about:

And here's an after (these photos are taken a year apart)


Another BEFORE


And another AFTER

Skating Lesson 7

I wasn't sure about today's lesson. We skipped Tuesday morning's lesson, because a sibling was sick w/ strep throat. On Tuesday mornings, we have the place to ourselves, and there are no other skaters on the ice to distract my princess. The afternoons are different, and the ice was more crowded, more chaotic, louder today, because this week is spring break for all of the public schools in our entire county.

My princess has been, let's say, grumpy, the past two days, and I wasn't sure how she'd handle the demands of a lesson. She managed. (!!!)

Coach has been scaffolding a snowplow stop by allowing my princess to work at the boards, holding onto the rail for balance. Today, she coached my princess through a snowplow stop away from the boards. Impressive, eh?

Here's a clip that illustrates some of the distractions:

I didn't get as much video footage today--trust me that she and Coach had a FANtastic lesson!

Flying creatures hatching in Kentucky

My mom, 600+ miles away from us, found this surprise in a bush near her garage today - thought you might enjoy!

Gotta love the internet for a moment like this one...she saw it, snapped a pic, and sent it over 600 miles in minutes!

Apologia: Flying Creatures of the Fifth Day, a TOS Homeschool Crew Review

I brought her home. Now what? How will I teach a precious child with unique learning challenges?

I don't have room for all of the questions I have when I think about homeschooling.

I really want a homeschool curriculum-product-materials-and-resource FAIRY to drop all of the right things in my lap.

Being on this year's Crew has given me, in a sense, that fairy. I'm an alternate on this year's Crew, and overwhelmingly, I've been given products that I am able to use with my learner at home.

Recently, the "fairy" dropped this one on my front porch: "Exploring Creatures with Zoology 1, Flying Creatures of the Fifth Day," ($35.00) by Jeannie Fulbright, from Apologia's Young Explorer Series.

"Apologia provides fun and challenging K-12 creation-based science curriculum specifically designed for the home school."

This textbook, like the others in the series, are written in a Charlotte Mason style and are meant to be used for a school year, and is an in-depth study of one subject. It covers, birds, bats, flying reptiles, insects, beetles, flies, and true bugs, butterflies and moths. There are 14 lessons in this book, with each lesson taking approximately two weeks to complete. The other books in this series cover astronomy, botany and more zoology. Click on "elementary science" from the Apologia home page to take a look. (An aside: my daughter is sitting with me as I type this review, and as I look at the page containing the elementary series, she asked me to order "Land Animals of the Sixth Day". She did not know that there are other books in the series!)

As soon as the textbook arrived and I opened it, my daughter snatched it from my hand and looked at it for a long time. I like to follow her interests, and she enjoys looking at books about animals. I suspected this would be a wonderful fit for us at home.

This textbook is *beautiful*. OMGoodness, the color photographs are gorgeous!!! You see this book, you immediately want to pick it up and look through it. I want to order the other books in the series just to *have* them, even though we won't get to the next one in the series for another year!

The author suggests that students work through the first lesson in the book first, and after that, families may skip around. I love that we are given "permission" up front to skip around, go out of order! We know we're going to skip around! :)

There's a "Need Help?" page at the front of the book, so parents know where to go for support if it's needed. An introduction explains how to use the book, including use of narration, notebooks, projects and experiments, and how to pace your family study. And then, there's a materials section that tells parents up front what items are needed to complete each lesson. Most of the items are common household or homeschool items.

I always scan lists for items that are off-limits at our house. Most of the items on this list are non-food items, and families with children with allergies to consider will find plenty non-food projects and experiments to complete. (Note for those w/ peanut allergies: Lesson two lists crunchy peanut butter in a recipe for suet. I am wondering what, if anything, we could use that is not a nut or seed butter for that particular project.)

There is an egg candling experiment in "Lesson 6, Matching and Hatching," that we will do as we dye Easter eggs later this week.

We're still addressing auditory processing issues and challenges in reading comprehension, so read-alouds with narration and reading alone are not activities we use (--YET. We're getting there, and we will get there!) And still, there is an incredible amount of "meat" in this book that I am able to use.

I've said many times in my reviews that relationship development is my priority with my daughter who is on the autism spectrum. I look for resources that scaffold the teaching process for me so that I can scaffold learning for my daughter. Academic activities can be a background piece, but relationship development must be primary.

THIS TEXTBOOK DELIVERS. Don't let my review lead you to think you must do everything with your child(ren). The experiments and projects can be completed by older children without much assistance, and, the same experiments and projects can be used as background activities for relationship development. In many of the experiments, perspective taking and comparison is built in as families monitor preferences of winged creatures in their own back yards. I love the two-fers that deliver guided participation / relationship development with thinking skills.

My daughter likes to look at this book. I find that for us, looking at the book together and my following the lead of my daughter works nicely. She and I need more experience with shared reading, and this book works for us. I read aloud parts that pertain to the photographs she views, condensing the material. Sometimes, she tries to read parts of it aloud to herself, and I stay close by, assisting gently. I try to use the terms from the book later, in context, when we're outdoors.

We have a science museum nearby with an incredible bat exhibit, and we will visit it when we get to the lesson about bats. I'd like to erect a bat house in our back yard.

Last fall, I bought a butterfly house kit at a charity book sale for a few cents, and as temps warm here, we'll paint it and put it up in the back yard, find some flowers that attract butterflies to plant nearby, and we'll focus on the lesson about the order Leridoptera.

We're probably not using the text in the way that most families are, but we are learning differently than most families. We've really enjoyed this item, and plan to continue to work from it. Apologia offers a money back guarantee if you are not satisfied. I am satisfied!

To read reviews about this and other Apologia products by my Crewmates, click HERE.

We are ON THE SAME SIDE

I attended the AutCom conference last fall. During that conference I gained an entirely new perspective on neurodiversity and on a working definition of "autism". And I realized something: Parents (the Warrior Mothers and Fathers) are using an *entirely* different definition from adult Auties and Aspies. AND, both sides are weak in terms of seeing the perspective of the other "side". Additionally, I realized in a HUGE way how MUCH we are all on the SAME SIDE.

*****

I was taught way back in college voice and diction classes that we are to pronounce words as the natives do. Envelope. Tomato. Mizzouree, Mizzouruh. I know a lot of folks from the state of Missouri who pronounce it w/ the "uh" sound at the end.

Adult Auties and Aspies are like native Missourians--I have to think they were there first (the "natives") and they can define it best, and maybe, just maybe, we should consider defining it their way.

If we DO define it "their" way, then we as parents and advocates, can separate the ILLNESS, the VACCINE REACTIONS, the ALLERGIES, the FOOD INTOLERANCES, etc etc etc the MEDICAL CRAP and call *THAT* something else and TREAT that stuff medically. When we appropriately label the biomedical crap, then we stop giving mainstream medicine the excuse to NOT treat our children because (to quote Kim Stagliano in a HuffPo piece,) "we're just not that aggressive in autism".

If we DO use "their" definition, then we as parents and advocates, can separate out the READING PROBLEMS, the AUDITORY PROCESSING PROBLEMS, the SPEECH AND LANGUAGE PROBLEMS, the SENSORY AND MOVEMENT DISORDERS etc etc etc and call of *those* something else, then schools can quit lumping our kids into contained classrooms and lumping all the puzzle pieces into a broad category of "autism". I'm tired, worn out, from hearing from parents whose school district won't evaluate and remediate a reading problem or an auditory processing delay or an "other" because in the school's mind the child's reading problem is not a reading problem, it's "because it's part of the autism".

We need to know, define what AUTISM IS NOT -- by doing that, we are better advocates for our kids as we work with the medical community and the educational community.

Adults on the autism spectrum (Auties and Aspies) talk about autism warmly, fondly, refer to it as a "culture", and they reflect on the positive aspects of autism. By their use of the word, their definition, the word is about the positives, and is something to be embraced. Presenters at AutCom 2008 talked about how much they are LIKE NT's, desiring relationships, growth, affection, having emotions, having theory of mind, etc. (Reminded me of Kathie Snow's visual about apples and how we are all more alike than different.)

On the other hand... Parents (the group with which I identify) of the younger "wave" of children with autism which began in the 1990's are defining the word autism in a big part by its negatives, by the gut issues, eloping/escaping, allergies, food intolerances, viral issues, inflammation, seizures, candida etc etc etc etc. When parents see a reduction in DSMIV traits after an intervention like the GFCF diet, they say the child is less "autistic". (I am one of those parents. My child is affected in a big way by her allergies, and working on them reduces, not eliminates, those items on the DSMIV checklists.)

Parents, in a big way, are defining "autism" by the parts that separate our children from us, the pieces that block communication and interaction. So... When parents use the "c" word ("cure"), or the "r" word ("recover"), or the "d" word ("defeat"), deep down inside the issue, we are referring to the medical issues that affect the health of our child, that in turn, affect the functioning of our child. Treating the medial conditions positively impacts the functioning of the child. We all learn better, act/behave better, function better when we feel healthy. So, what those parents refer when using the "c" word etc, is really the medical piece.

But... Auties and Aspies, seem to (by my observation over the last eight years) hear the "d" word as the definition "wipe out all the people with autism from the face of the earth", because they are not defining "autism" by the stuff that tends to be on the negative side, and instead, are defining it as the parts of themselves that they treasure. They aren't hearing us parents as wanting to remove obstacles for our children so they can BE who they ARE and TREASURE themselves.

Jay Kochmeister, Sharisa's dad, told me during the conference that Sharisa puts it this way:

"Preserve the gifts and throw out the garbage."

I wish we (all of us) could come up with some common terminology and lingo that we all use the same way, a framework that would make it easier to sort out the "autism" from the "other" so that we can get the help for our kids that they need. We are ON the SAME side. We need some language, lingo, terminology that reflects that fact.

Respectfully,

Penny

GFCFSF Pumpkin Bread

I have been EXPERIMENTING w/ a GF pancake and waffle mix.

Saturday, I made banana bread using Trader Joe's gf pancake and waffle mix as the flour blend-- quite an experiment--and it was FABulous. I took it to our small group dinner, Saturday night. Sometimes, GF stuff is distinctly different in texture. But this was NOT. We were all amazed by how good it was!

Today, I decided to use the remainder of the gf pancake and waffle mix, but I am out of bananas, soooooooooooooo I used my great aunt's banana bread recipe, and used pumpkin instead of mashed bananas. To replace the recipe's two cups of wheat flour, I used pancake and waffle mix. Trader Joe's gluten free pancake and waffle mix is 18 oz (1 lb 2 oz), costs $2.99, and the ingredients read SWEET BROWN RICE FLOUR, TAPIOCA FLOUR, ARROWROOT FLOUR, RICE MILK POWDER, CREAM OF TARTAR, XANTHAN GUM, BAKING SODA, SEA SALT, VANILLA BEAN.

Thumbs up! It is not as sweet as the banana bread, but it is tasty!

Tuesday update: Four thumbs up and one thumbs down at my house. The kidlet who is *on* the gfcfsf diet gave it a thumbs up. We're calling it a cake-bread, because it is like a cross between a cake and a bread.

No April Fools. SNOW!

We woke to five inches of snow with more coming down.

"Thou hast set my feet in a very large room"

Tammy's response to one of my blog entries has inspired a new blog entry from me:

From the work of Charlotte Mason, "Our aim in Education is to give a Full Life. We begin to see what we want. Children make large demands upon us. We owe it to them to initiate an immense number of interests. 'Thou hast set my feet in a large room' should be the glad cry of every intelligent soul. Life should be all living, and not merely a tedious passing of time; not all doing or all feeling or all thinking -- the strain would be too great -- but, all living; that is to say, we should be in touch wherever we go, whatever we hear, whatever we see, with some manner of vital interest... The question is not, -- how much does the youth know? when he has finished his education -- but how much does he care? and about how many orders of things does he care? In fact, how large is the room in which he finds his feet set? and, therefore, how full is the life he has before him?"

Reminds me that video games, computer, TV, all the fun electronics that can monopolize our time, can create for us a very small room in which to set our feet.

Filtering through some of the mess

April 3, 2009 transcript from Larry King Live is HERE.

I'm disappointed that the autistic community still sees "warrior" parents as being on an opposite side, as evidenced by Carly's words last night on LKL.

CARLY FLEISCHMANN, LKL BLOG CORRESPONDENT: For as long as I can remember I have had autism. I overheard Jim say that he felt like he didn't remember things when he was (inaudible) -- I also know many autistic kids that are exactly the same way. Parents know what I'm talking about. Kids that can tell you (inaudible) or can memorize line for line different movies and TV shows. Doctors would like to tell you that we have a hard time processing information. It's not really true. Our brains are wired differently. We have take in many conversations at once. I have learned how to filter through some of the mess.

KING: A comment from Carly, our guest blogger with autism: "it's the kids that are lost, because the parents are missing the cues by their children while they're wrapped up in all this."

___________________________

I found Carly's blog, HERE.

I don't understand why she criticizes parents for "being wrapped up in this", with "this" being treating the biomedical pieces, when I read this from her blog:

"Carly had another message for people who don’t understand autism.

'Autism is hard because you want to act one way, but you can’t always do that. It’s sad that sometimes people don’t know that sometimes I can’t stop myself and they get mad at me. If I could tell people one thing about autism it would be that I don’t want to be this way. But I am, so don’t be mad. Be understanding.'"

___________________________

Individuals who are on the autism spectrum are the experts, and I listen to them. They are wonderful teachers to us. I've been blessed and privileged to know several expert teachers on-line and in-person. Kassiane Sibley, Sondra Williams and Sharisa Joy Kochmeister have taught me more than anyone about my own daughter by sharing from their experiences. They've taught me about ME. I owe them a debt of gratitude. They have changed ME for the better in how I think about autism, how I go about making decisions for my daughter, not only how, but why I intervene.

An aside: The paragraph above illustrates the fact that there are, indeed, autistic adults. I'm still not sure why folks like Jenny McCarthy and J.B. Handley, who are doing so much good in terms of awareness for treatment of the medical "stuff" we see a lot in autism, would go on LKL and say that there are no autistic adults. That's just crazy. I know a LOT of autistic adults, and statements like that play a big part into why the neurodiverse camp is at odds with the "warrior parent" camp.

The words Carly typed during LKL are disheartening to me, because Carly is missing the point. She can't see that we are on the same side. The parents are doing exactly what Carly says she has learned to do. We parents have learned that, for many of our kids, changing diet, righting vitamin and mineral imbalances, dealing with chronic, systemic yeast, addressing chronic constipation or diarrhea, and other biomedical treatments actually sharpens the "filter" that Carly types about, and allows our children to be who they are, who they were meant to be, by removing obstructions in that filter. Why should any child have to *learn* to filter information because that child has biochemical factors weaken the child's filter? If there are treatments that help (and there are)...and if there are indeed environmental causes that are at play, (and I believe there are), the loving and responsible thing to do is to talk about them, study them, and tell others.

When are we all going to wake up and realize that

WE ARE ALL ON THE SAME SIDE?!?!?!?

PS: I would very much like to see an in-depth interview with Carly. I suspect that Carly's typing speed would not make for good live TV, and a taped interview would be a better format for TV and Carly than LKLive.

http://transcripts.cnn.com/TRANSCRIPTS/0904/03/lkl.01.html

What do we want our children to know?

Here's a quote I saved from an internet chat that has helped me think about intervention, teaching and learning:

"As parents and teachers we need to think about what our goals are for those we are involved with. Not so much how we teach but what we want a person to know."

Psychologist Barbara Luskin

(mother of a child on the autism spectrum)