Back on GFCF!

Back in June, we took Demi off the GFCF diet. We didn't see a significant difference at first.
However, over the course of the summer, it seemed that her number of tantrums increased.

While on the diet, I had moments of pleasant surprise when I witnessed her doing something more easily than before or doing something new that she couldn't do before. Her tantrum moments decreased to maybe once every two months or so - not that often. (By "tantrum," I mean that she gets fixated on something - something she wants or something that doesn't go as planned - and gets very upset when she doesn't get it or it doesn't happen as she wants. No explanation makes any difference. Redirection doesn't work. She just won't listen to anything.)

By August (after two months off the diet), the tantrums were maybe once a month. Since we hadn't seen them in a while, it was quite stressful. I didn't do a very good job of keeping track, so I didn't have exact numbers. Since supplements had not been 100% regular over the summer, I decided to get them back on a regular schedule and see if that resolved things. It did not. The end of August came and went, and September passed by.

Finally, last Sunday (9/27/09), after another tantrum (because we didn't have eggs to make pancakes), we decided to put her back on the diet. DH had not been terribly supportive of the diet, thinking it didn't help, but even he agreed to put her back on the diet. If the tantrums decrease (I'm trying to keep better track!), I think he'll agree that the diet makes a difference.

In addition to the increased tantrums, I had more moments of unpleasant surprise, when things were harder for her or she suddenly couldn't do something that she had done before. Concepts at school which she had mastered were suddenly lost. Teachers commented that she was inconsistent.

It's been almost two weeks now. Too early to really tell, but we haven't had any tantrums yet - just whiny on occasion. Just yesterday, I was pleasantly surprised that she did her math homework mostly correctly and mostly independently. While she was doing that at the start of school (early August), she has been struggling lately.

I hope I start to see more moments of pleasant surprise again. I don't expect any huge sudden changes, but I realize how those "small," "insignificant" changes really do add up over time. They become big when you start to see them evaporate!

Demi Learns to Ride!

On a lighter note, Demi learned to ride a bike this past week! We are very excited about that! We’ve tried getting her to ride on several occasions over the past few years. Her younger sister has been riding for almost two years now. But I don’t think Demi has been ready until now.

We started by getting her comfortable on the bike without pedals. The seat was low and she could easily put her feet on the ground for stability. She started just by pushing herself around on the level drive way. Next, she was able to coast down a gentle slope in the yard, balancing on two wheels, fairly easily for very short distances. Next, she was able to coast down the gentle slope of our street for a pretty good distance.



Next, we put the pedals back on and encouraged her to coast like before, but with her feet on the pedals. After that, since she had to get back up the slope, she started pedaling on her own relatively easily.



Then it was a matter of practicing to build strength and confidence. By the end of the week, she was able to ride down the street and all the way back up on her own. It's not an insignificant slope! Yesterday, she did that three times!



My husband has been very diligent about practicing with her every night. He bribed her each day with dessert or candy. If she did X, she would get her reward. Although she frequently didn't want to continue, she would toil on to get her reward. He raised the bar pretty significantly each day, but she was up to the task!

Of course, it was not without incident. DH had been running the length of the street with her to ensure she didn't fall over. The first time he had her do it without him, she fell over and skinned her knee pretty badly. The next day, she had new knee and elbow pads, along with little riding gloves. That day, with her new pads, she took another good tumble. Because of her pads, she "only" had bruises on her back and hip where she hit. Since she couldn't see any scratches, she "recovered" remarkably well.

Yesterday, we went to our local BMX track for Dana to practice. Demi was riding on a smooth track around the outside of the BMX track. As Dana was coming off the track onto the smooth path, Demi was coming down a small hill on the same path and (you know what happened) - front end collision! Unfortunately, Demi caught the brunt of it, flew over her handle bars, and landed on her face. :o

So now the poor dear has a skinned knee, a big bruise on her hip, a few scratches on her back, a huge fat lip, and scratches from her nose to her chin. What a rough week! BUT, in true Kabuki fashion, she has not complained at all! She's as cheery and happy as always, proud of herself for her huge accomplishment this week. We are very proud of her, too!

(Demi is 7.5 yo.)

June Update

We have a lot going on this summer, so I’m overdue for an update.

Last week, we went back to the Dr. (pediatrician with a “natural” bent) to discuss Demi’s custom vitamins and next steps. He said if the vitamins helped, we’d see a difference within a month. That hasn’t happened, so I went back to find out what to do next.

I also asked about GFCF. Although I believe GFCF helped with her meltdowns and emotional regulation, I had never seen a huge behavior difference. We've been doing it for 1.5yrs. I asked about re-introducing gluten and casein. He said to do them separately so we’d know if one and not the other caused a problem. He said gluten would be more likely to cause behavioral issues than casein.

We started Demi back on dairy last Friday, with no noticeable side effects. By accident, while at summer school, she was given ‘Nilla Wafers this past Tuesday. So, we’d had four days without casein, which should have been enough to verify that casein did not cause any substantial reactions. So, as of Tuesday, we started her back on gluten. Jury’s still out on that – it’s been five days. So far so good.

At the Dr’s last week, he mentioned three possible next steps: MB-12 injections, bovine colostrum, and neurotransmitters (oral). Of those things, he said the MB-12 injections would have the highest chance of making a difference (as judged by population at large, not Demi specifically) and they were the cheapest option. So, I ordered them and they arrived earlier this week. I’ve opted not to start them just yet, waiting for the gluten to reveal itself (or not).

First Grade Retention Part 3

Decisions! Decisions!

At the Pre-IEP meeting, all the teachers recommended retention. I resisted the idea, then kind of got used to it. At the IEP meeting, they all recommended promotion. I went along with it, since that's what I wanted, although I wasn't 100% on it.

Just this past weekend, I started having major second thoughts again. A series of coincidences (are there any coincidences?) made it pretty clear to me that God was sending me a message (hitting me over the head with a brick might be more accurate).

Saturday evening, we went to a church event and I ended up sitting next to a woman with a special needs child and discussing the retention question with her. They had gone through the debate with her 13 yo special needs (ADD, etc, learning disabled) child, ended up retaining her in 5th grade, and then sent her to a private school for learning disabilities for 6th grade where she has thrived.

Sunday morning while sitting in church, I started thinking about all the advantages to retention - confidence in her academic abilities, having school be fun, self-esteem, strengthening her academic foundation, etc. The social aspect that I'd been leaning on - I didn't want her to lose her friends; I didn't want two sisters in the same grade - seemed less important.

After church Sunday, I went to Starbucks instead of going home. Atypical, since my family was at home waiting for me. My cell phone died, so my husband couldn't talk me out of it. So I went and ended up meeting a father and son. Guess what? The son was special. I ended up talking to the father at length about challenges, including the retention debate, which he just went through again for 9th grade.

Something he said made more sense than it had before: At this point in Demi's academic career, we don't KNOW her potential. So we HAVE to give her the best opportunity to succeed academically, which I believe would be retention now, for all the reasons mentioned above.

This week, I received a number of end-of-year assessment results, including CRCT, all of which were more positive than negative. She actually passed (barely!) all of her CRCT's. Although she's struggling, she's getting it. With another year, she'll have a much firmer foundation and perhaps be able to succeed on her own. (I'm always optimistic!)

Demi's Ditty

This video is over a year old, but it might be helpful to other parents wanting to compare voice quality with another KS child.
Demi was 6yo in Kindergarten.



Tell me what you think!

Esophoria and Kabuki

I guess my reprieve is over for now. Earlier this year, I was thinking how nice it's been that we haven't been dealing with any "issues," other than the ongoing ones - twice weekly therapy and night homework struggles.

I can't remember now what prompted me, but I decided to act on a referral from last July and made an appointment with a vision specialist. For a long time, Demi had been doing odd things that made you wonder what she was seeing: she can't write "on" a line, she orients shapes/letters in strange ways sometimes, she practically puts her head on the table to do her work, and more.

This past Monday, we visited a doctor specializing in visual perception issues. Before making the appointment, I talked to the referring doctor who briefly mentioned esophoria. I don't recall him mentioning that before. The specialist, Dr. Sharon Berger, wholeheartedly confirmed a diagnosis for Demi of esophoria.

I found a description to esophoria online:
"Esophoria: Another eye coordination problem is termed esophoria, which is a tendency for the eyes to turn inwards. The educational implication of this particular problem is that a child with esophoria sees things smaller than what they actually are. In order to see an object properly, it is necessary to make the object larger. The only means at the disposal of the child to make it larger is to bring it closer. Eventually, the child is observed with his head buried in a book and still not achieving."

I couldn't believe how accurately that explanation described Demi! She has ALWAYS, from the time she could sit at a table and look at something, had her face right on the table! She always puts things very close to her face. She still like looking at little character figures, but she puts them right up to her face. After this explanation, I'm amazed she can read as well as she can. Her weakness is math.

Thankfully, the LEA at school pushed to get her large print materials for the CRCT, just on the hunch that it might help her. I'm SO glad she had them, given this new information. (We won't get the results of the testing for another few weeks.) Her IEP is coming up next Monday, so large print materials for next year will definitely be on the agenda. The problem will be figuring out whether she'll be in first grade or second grade.

First Grade Retention Part 2

Ok, four weeks later and I'm in a different place now. Her actual IEP is next week, but I don't have to give them a final answer on the retention yet. Just last Friday, I spoke to the mother of a first grader who was having trouble reading. So much trouble that she elected to remove the child from school in order to provide the copious one-on-one time that she needed to learn to read. Her plan is to revisit kindergarten and all of first grade over four months. So far, she has been making good progress. She's doing 21 days of curriculum each day.

After that conversation, I started thinking that maybe we could do the same thing over the summer to catch Demi up in math. Would it really be possible to revisit weak areas from kindergarten, review the first half of first grade, and push through the last half of first grade so that she has a firm grasp on all the concepts of first grade? A decided maybe.

Additional issues we'll be dealing with this summer: juggling vitamins/meds for attention and vision therapy to repair binocular vision. A full plate, no doubt, but not impossible.

In order to judge the effectiveness of attention meds, I would have to be working with her in an educational setting. "Summer School" would assist me in making better judgments about those meds. Same goes for vision therapy. With a structured schedule for school, I would have to incorporate 10-15 minutes each day for vision therapy and also be better able to judge whether the therapy is making any difference.

Challenge: She resists my efforts to teach her or work with her. She immediately starts negotiating whenever I say it's time for homework. It's a frustrating experience for both of us. How will I overcome that attitude? I suppose the answer is to "make it fun," but I seem to be incapable of doing that. I believe I was cheated on the creativity gene.

Suggestions?

Retention in First Grade?

I've had a rough week. Monday night, Demi got a test back where she missed 9 out of 10. It's getting close to CRCT time. (Here in GA, that's the minimum standard test at the end of each grade.) Although she's in special ed, I had thought, with enough help, that she'd be able to at least pass the CRCT. It doesn't look like that's going to happen.
Tuesday, I attended a "pre-IEP" meeting. In retrospect, I believe the purpose of the meeting was to throw out the possibility of retaining Demi in first grade. Not something I wanted to hear. The irony is that, if she weren't doing as well as she is, they probably wouldn't be recommending retention; they would recommend to pass her along. Since she has the ability to master first grade skills the second time around, they're recommending to have her repeat first grade.

I'm angry.
1. I'm angry at God for visiting this challenge on me that I am so incapable of meeting.
2. I'm angry at myself for being so incapable.
3. I'm angry that we've worked so hard (she works 10 times harder than most other students) and we're still coming up short.

Now I need to decide what to do.

More Slimy Ear

Since Demi has a history of "slimy ear" (fungal ear infection), I'll relate our latest episode.

A couple of weeks before Christmas, we ran out of ThreeLac, one of the supplements we use to fight yeast. Just three days later, Demi started complaining that her ear hurt.

Based on previous results, I immediately gave her some ibuprofen for pain and swabbed her ear with anti-fungal cream. That night, she woke up twice in quite a bit of pain. I comforted her as best I could, giving her a bit more ibuprofen and another swab each time.

The next morning, she was pain free and went to school as normal. (Good thing, since her big Christmas party was that day!) We continued that routine for the next couple of days. I thought it was taken care of.

A few days after stopping, the pain came back, in both ears this time. I repeated the same thing once again, but kept it up for a week after the pain dissapated.

No problems since.

Truvia?

I just got a couple of sampler packets of a new sweetener called Truvia. Anybody heard of it?
It says it's made with erythritol.

So, onto the internet. What's it all about? Is it truly "natural?" Any harmful effects? Here's what I've found so far:

• derived from sugar, just like xylitol
• 60-70% as sweet as sugar
• .2 calories per gram ("almost" calorie free)
• absorbed by the small intestines and less likely to cause any negative side effect like xylitol or maltitol (unless consumed in excessive quantities)
• does not cause cavities (like xylitol)
  does not sound like it's great to bake with as it tends to dry things out, doesn't dissolve as well as sugar, and may not give the desired consistency
• although it's been around for awhile (FDA GRAS status since 1997), it's not widely available (Maybe Truvia will change that?)

I tried the Truvia sample packets in my tea this morning. Tastes ok to me. I didn't find anything negative about, but perhaps I didn't look hard enough. Anyone have additional information?

I found a 1lb bag of erythritol here: