Friday, March 06, 2009

The lavender dress

Jennica and I dropped by Fred Meyer yesterday after therapy. They carry her very favorite gluten-free pretzels, so we stop there pretty much every week to refill the stockpile. Its usually a pretty in-and-out sort of trip, but this week, I'm on vacation, right? So we wandered deeper into the bowels of Fred Meyer.

Of course, we ended up in the little girl's clothing section. Both the girls are growing like weeds, and since Jennica has decided that she is no longer willing to wear jeans (long story), they're both short on pants at the moment. While I was checking out the clearance rack, Jen became buried in a rack of frilly Easter dresses.

The first dress she brought to me was about a Size 14, and was a red-and-white floral print. "Mommy.....can I get this dress? Please??? Please please please? Isn't it be-YOO-ti-ful?? Please please please?"

I convinced her that it was way too big for her, and was pleasantly surprised when she drug it behind her (literally) back to the rack and hung it up. Hmmm. She does't even do that at home.

Pretty soon, she came back with a very frilly solid lavender dress in a gauzy chiffon-type material. Brown eyes wide.....she LOVED this dress. "Mommy...."

I said, "No, Jen," before the begging even started. It was about a Size 10, and I just wasn't in the mood to buy Easter dresses.

She gave me quite a spiel, and in a detached way, it was fun to listen to her blossoming vocabulary as she stated every redeeming quality she could think of about buying this dress. When she was done, I very gently said, "Maybe another day. We're not shopping for dresses today. Can you put it back and then come look at pants with me?" I promptly turned my back on her as an attempt to end the conversation.

Pretty soon, I heard a little voice again, "Mom." I turned back around and she was WEARING the lavender dress over her leggings and t-shirt. She had actually taken it off the hanger and pulled it on right over her clothes. Funny as she looked, my sense of humor pretty much escaped me at that moment. I know I was hissing, "Jennica.Angelie.Take.that.dress.off."

"First, I want to see if it twirls." And she proceeded to spin around, right there in the clearance aisle, to see if the dress would spin.

And then, much to my amazement again, she took the dress off voluntarily, helped me put it back on the hanger, and we hung it up and moved on. No temper tantrum. No fit. No meltdown......"I WAAAAAAAANTTTTTT the dress!!!!" None of that. Once again, hmph. Progress.

I really wished I had taken a picture of her in that dress with my cell phone. She did look SO cute. But don't tell her I said that.

Sensory-seeking vs. sensory-defensive

Okay......I've mentioned on here a few times that I was going to get around to explaining the ins-and-outs of SPD a bit more. Many of you "regulars" here have asked some great questions and, to be perfectly honest, most of you are already far ahead of the average population if you know that SPD stands for Sensory Processing Disorder. So in a hugely-simplified format, here goes.....

Sensory Processing Disorder is exactly what the name says--a glitch in sensory input and how it is processed by the brain, to such a degree that it makes overall life functioning difficult.(Remember.....we all have sensory issues to some degree. Our ability to cope and function is the key.) But there are about a gazillion ways that SPD can manifest, and it is very individualized.

There are two basic extremes to SPD. Sensory-seeking is on the one end, while sensory-defensive is on the other. An individual that tends to be sensory-seeking is one that generally has a diminished sensitivity to input, and therefore, increases activity and sensory input in order to "sense" it fully. (I know....read that sentence about five times and maybe it will make sense. No pun intended.) These tend to be your kids on the playground that are always wanting the swing to be pushed higher, they want the TV louder, they dance on the dining room table, they run around in the rain with no coat on, they dig into finger paints with gusto...always seeking MORE input.

Sensory-defensive is the other end of SPD. These are the kids that tend to hide under tables in noisy classrooms, tend to be clingy, can't stand tags in their clothing, cover their ears from loud noises, don't want their hands dirty, and sometimes don't even like to be touched or hugged by parents (even in infancy). These children are consider to be very sensitive, obviously, and don't want strong input.

Now.......a huge portion of SPD kids fall in between the two ends of the scale. In fact, many of them will send "mixed signals" which creates total havoc with diagnosis if you're not working with someone that understands how the brain reads sensory information. Sensory-seekers are often poor at judging when enough is enough, so they overload themselves with too much high-end activity and end up under a table somewhere with their ears covered trying to regain some balance, which looks like a sensory-defensive kid, right? And a child that can typically be sensory-seeking might be sensory-seeking in virtually every manner.....except that they have a tactile issue on their hands and can't deal with weird/slimy/sticky substances. Once again, if they are evaluated on a limited basis, they will appear to be sensory-defensive.

Once again, this is an extremely simplified version of SPD, but might give a little bit of insight into the basic degrees of what SPD can look like. Jennica tends to fall on the sensory-seeking side of the scale, but this varies from day to day, and is affected by a ton of outside influences. And, of course, now we know it is also highly affected by her diet.

And as you read this, keep in mind that I didn't touch on any factors of what auditory-processing disorder, visual-processing disorder, or any of those subsets look like. Overwhelmed yet?

Wednesday, March 04, 2009

New photos of the gang






I'm just posting new photos of the kids!!! Both boys are in the process of transitioning from wrestling and basketball and into track season. I am so proud of their academic and athletic accomplishments--all while helping out here at home with whatever needs doing at the moment. Tiersten is also academically ahead of her class, loving ballet, and she probably has the toughest road right now, since so much of our attention is focused on getting Jennica's therapy schedules and diet stabilized. It's really not fair that she sometimes has to fend for herself a little more than she would otherwise, but all families with special needs children deal with constant issues of time and balance. Particularly during the "high-focus" times of trying to find routine. And then, last but not least, is Jen. I should have posted the photo of her glaring at the camera. :)

To all four of you: I'm so proud to be your Mom!!!

Tuesday, March 03, 2009

Mistake on top of mistake


Okay.......I blogged yesterday about Jennica's consumption of a bagel on Friday morning. A regular bagel. Full of gluten. And the following rash and beastly behavior. Due to the rash, she licked her lips all weekend, which resulted in chapped skin around her mouth. Lovely.

Anyway, since chapped lips are generally rather slow to heal and they really DO look nasty and she's been picking at them a bit and I really don't want them to turn into a bloody mess.......last night at bedtime I put some carmex on her. Due to the sensory feel of stuff on her lips, she doesn't tolerate it well, so she didn't end up with very much. And part of it ended up more on her left cheek than on her lips.

This morning, she woke up with her lips and mouth area covered in little red dots. Sigh. I went back and double-checked the little carmex container and there is nothing specifically there that is known to me to be a gluten-containing substance but, obviously, SOMETHING in the carmex kicked off a reaction. She's out of school this week anyway due to some teacher training and basketball tournament, so she's just been hanging out here with me all day.

Sigh..........some days this truly is exhausting. Even when I THINK I know what I'm doing, we find out a different ingredient that doesn't suggest gluten, but DOES contain gluten. (Like caramel color, or EDTA, or everything in the world that is rolled in gluten but not required by the FDA to disclose it....like raisins). The cosmetics products are truly a nightmare. We've switched her over to gluten-free/casein-free soap and shampoo, etc. but she really needs to be using GFCF soaps at school/day care also. We haven't even started that battle yet, and I'm not sure we will. Is it really realistic to expect her teachers to follow her around THAT closely all day to make sure she is using soap we have provided? Maybe I'll change my mind at some point, but at the moment, that sounds incredibly invasive to me. Talk about being "the nightmare parent"........

So I guess carmex is off our list.

Monday, March 02, 2009

Some answers for ME...

I don't talk a lot about myself here on this blog. Most of my life centers around my family and their activities, or the appraisal business. As a typical Mom, I tend to measure my success based upon them, rather than my personal achievements. I always kind of figure that "my time" will come again when the kids are gone. Until then.....my family is my priority.

With that said, I will admit that in the past year (particularly in the past 3-4 months), through Jennica's trials and tribulations, I've gained a lot of knowledge about nutritional impacts on the general health of the human body. I took a nutritional course in college, and I thought I had a pretty good understanding before now of how important nutrition can be. However, I wasn't living it and I didn't truly understand the ramifications of foods and vitamin and mineral deficiencies upon everything we do. In fact, I admit to be totally and completely annoyed in the past by people that "preach" naturopathic treatments. I wasn't against naturopathic medicine in any way. I just didn't necessarily embrace it. In some cases, I still don't. But through Jennica, I'm becoming a believer in "integrative medicine," where conventional doctors work side-by-side with naturopaths, therapists, and nutritionists to develop "whole body" plans for their patients.

Well......in reading about nutritional treatments for children with neuro-developmental disorders and becoming aware of the depths of success far beyond conventional medical treatments for the same conditions, I started seeing and noticing things in my own life that I had refused to recognize before now. For example, my exhaustion, that I had simply chalked up to having four active kids and being self-employed with little time for relief from our wild schedule. My joint pain, which comes and goes but seems to be worsening over time. Could it all possibly be tied to my diet? Could I be allergic to foods, just like Jen? Could I have vitamin/mineral deficiences that were causing my symptoms? I decided that I wanted to know.

So I found a really great naturopath, in the process of looking for a new naturopath for Jennica. She's easy to talk to, she's funny, and she instantly grasped what I wanted to accomplish. A whole bunch of blood later, I got my results. Today.

I'm wildly allergic to everything under the sun that is related to dairy foods. Yogurt/cheese/whey/casein/milk/lactose.........that whole entire food family. AND I'm horribly allergic to cane sugar (which is going to be the real killer for me). I'm also suffering from a really severe B12 deficiency, and a pretty standard deficiency of Vitamin D. Otherwise, I'm actually a VERY healthy person.

So, believe it or not, I actually learned today how to give myself Vitamin B12 shots. I've given shots to dogs and horses for years, so it doesn't really bug me, but its still a little weird to give myself shots. The dairy and sugar will have to be eliminated from my diet. Totally. I might have to have a grieving period for pizza. And don't give me any BS about "cheese-less pizza". Pizza without cheese is NOT pizza. Just let me grieve......

But my new friend and doctor is pretty convinced that my joint pain and exhaustion is all treatable with correcting my diet and re-building my vitamin deficiencies. All in all, I got off rather easy. I still get to eat chocolate. And very shortly, I should be bouncing off the walls with newfound energy. I'll keep you posted....

Sunday, March 01, 2009

I QUIT.......temporarily.........

This past week turned into an appraisal-marathon with one goal in mind.......to get all pending reports out by the end of the business day on Friday. (I almost made it.....I had to take a break for a change-of-sports meeting at the school at 6:00, and then hit the computer again and completed the last one about 9:00 pm.) The reason this goal was so crucial is that I am now officially on vacation! For two whole weeks!!! WAHOO!!!!

I came to the realization about 3 weeks ago that I was running myself into the ground. Physically and mentally........I was on "empty". So, rather than just feel sorry for myself, I decided that it was time to make some decisions about resolving some issues. The answer was to take a lengthy vacation in early March, and do some really creative scheduling to maximize the time away from appraisals and still accomplish something productive. Hence, we have five doctors appointments scheduled for Jen in the next 10 days. Part of the appointments being done like this is just sheer coincidence that some of the specialists we've been trying to schedule just happened to fall into place in early March. And the other part was deliberate since I'm going to be off. I also am going to spend some leisurely time working on computer data exports and spreadsheets to prepare for some appraisal regualations that are set to change on April 1st. (Ah.......the joys of working in a declining economy where all the major players are placing the blame on someone else.)

Of course, I didn't exactly anticipate that Jennica was going to scale the kitchen walls on Friday while I was in the shower to feed a craving for a gluten-filled bagel. She is usually so incredibly good about respecting her dietary limits that this was totally out of the blue. Despite catching her munching about halfway through, and immediately giving her digestive enzymes, which are supposed to help her digestive system in case of an "accidental" ingestion of an allergen.......within about 30 minutes her neck was covered in little red dots, which slowly spread up her face and turned her into a radish. I don't understand why we didn't see rashes BEFORE we removed gluten from her diet, as she was just as allergic then, but we sure see them now. She got through the day at day care okay......but the behavioral impacts were raging by Friday evening. After 2-3 weeks of really drastic improvement, we plummeted back to sensory dysfunction in a hurry. She has been raging and screaming ever since. This morning, she couldn't even tolerate the physical sensation of a hairbrush. This afternoon, she is tactile/vestibular sensory-seeking to the utmost. She's stripped down to the panties and running around the house enjoying the feel of the air on her skin, rolling on the floor, climbing to high places.......anything she can do to gain input. I honestly hadn't really noticed that her sensory-seeking behaviors had subsided until now! And, oddly enough, her outbursts of rage today have been followed by tears of remorse, which pulls at my heartstrings. Its AWFUL to hear her crying, "I'm so sorry, Mommy! I'm so sorry! I don't want to yell at you!" I can only chalk it up to the fact that, after a few weeks of feeling like the world was "right", it must be so hard to feel so out of control again. And all over ingesting some wheat flour from a bagel??!!?? Its mind-boggling!!! But we're living it!!!

So, out of necessity, the white board is back out to get through a simple meal. Visual reinforcement.....visual visual visual. She will improve, with a best prediction of about Monday evening or Tuesday morning. Until then, we bite our tongues and be patient. And try to remember that she's out of control, and she doesn't like it either. Punishment would be like punishing an alzheimer's patient for forgetting things.

I'm going to enjoy the next two weeks. To the fullest. I might even take a nap. Or two. Or three. And sit and drink hot chocolate. And maybe even turn on the TV. :)

Monday, February 23, 2009

I'm a lousy sick person

For whatever reason, I got sick this weekend. Sinus crud, stomach crud, aching....and I do NOT like to be sick. It stresses me out, because all I can think about is all the things that I need to be doing and how I really don't have time for this bologna.

But......I ended up spending the vast majority of Sunday in bed. Sleeping. Accomplishing nothing. Now I'm behind on everything. UGH! Oh well....not much I can do about it.

Fortunately, I was scheduled to be in the office today, so I have been able to work today from home, without having to totally re-shuffle the calendar the rest of the week. Tomorrow, I have to be on the road, so I hope I feel more rested by then.

I am such a lousy sick person.

Thursday, February 19, 2009

3 steps forward.......2 steps sideways.......

Jennica has had a very phenomenal week. She's been easier to reason with, slower to tantrum and much more likely to verbalize first (and then tantrum if she doesn't get what she wants), and has been showing some huge improvements in motor planning functions, which involve the multi-step progressions that we all tackle daily, but are often difficult for those with SPD due to the massive sensory input that comes common tasks such as getting dressed. (Most of us have done it so many times that we don't contemplate the sensory input involved with choosing articles of clothing based on weather outside, season, color, practicality of what our day will involve, and then undressing and dealing with the temperature change on the skin while we re-dress, the changes in gravitational input that our body experiences as we bend and twist to put on socks, shoes, etc. And the dexterity involved with fastening buttons. And on and on and on.)

The huge sudden progression is due to a variety of things. She has now been gluten-free for about 10 weeks, which is a logical place where the gluten may finally be almost totally out of her body. We've also "played" with some of her supplementation based on her lab results. And, finally and probably most significantly, our OT added a 5-minute routine into her therapy each week. Believe it or not.......a specially-designed music listening program that somehow gets her brain and her ears on speaking terms with each other. I know.......I know......I don't get it either. But its WORKING!!!

So we marched into therapy this morning feeling like we've made some really huge strides! Even better, the strides are really evident to other people in her life, so I know it is not just a case of parent-wishing-success-upon-their-child. The Day Care is wanting to know what has changed. The preschool teacher is asking why she's suddenly much more cooperative. And the OT is seeing physical and cognitive changes both. YES!!!!

And then our bubble was burst. With progress comes the unavoidable consequence of.....progression! While this is truly a good thing, we didn't get much time to bask in the glow of success. Our OT is taking full advantage of the open mind, and piled on a whole new set of information for us today. I had a real "lightbulb" moment at therapy today, as some information with Jennica's use of her hands and the "why" suddenly and totally clicked for me. She has always had very good dexterity with her hands, so some of the things that she is reluctant to do, such as handwriting for very long when she will color forever, hasn't made sense to me. Today, I got it! Tiny, subtle changes in hand position make all the difference as to what muscles are driving what. And, even better, I'm learning the tools to help her strengthen her good skills, and build on the weaker ones!

And the vision therapy is finally falling into place. Its taken a few weeks to get all the team members in position, but very shortly, we will be proceeding in a full-blown visual processing program.

So......progress is leading to new therapies and more work. It is so great to see the dark circles (a sign of severe food allergies that nobody ever mentions until AFTER you've been diagnosed......go figure) disappearing beneath her eyes, and she's FINALLY sleeping a continuous 10-11 hours per night. And the beat goes on.........

Wednesday, February 18, 2009

Mid-week madness!


Ah......Wednesday. The day where its too late to pretend I'm on vacation, and too soon to figuratively turn off the phone and go back to bed. This week, I'm trying to see the oddities in life as humorous, and just going with the flow.

1) I saw a camel today, while out inspecting a property. Yes......a camel. In a pasture. In Southwest Washington. He looked more than a tad out of place. Where do you buy a camel? How much do they cost? What do you feed them? What kind of veterinary care do they require? All questions to ponder when you're in the middle of nowhere and wonder if you're hallucinating. I took a picture.

2) I travelled today to a neighboring area with a strong wrestling team that competes against Dane's team. In fact, I saw several of their team members last weekend at the Regional wrestling meet. Their wrestling uniforms are solid black singlets with "Go Mules" written across the rear end in red writing. Whatever coach ordered this wording placed there should be shot, and I'm shocked and amazed that the boys actually wear them. And in public no less.

3) I made gluten-free/casein-free/egg-free biscuits for dinner last night. This is the second time I've made them, but the boys weren't home the last time. The flavor isn't bad, but they are made out of potato starch flour and an odd concoction of other ingredients that results in albino-white (will NOT brown at all) circular devices very similar to hockey pucks. I think the boys finally decided last night to refer to them as "Bulletproof Biscuits," as they are very hard on the outside. These aren't something I would ever subject anyone outside the family to, but Jennica devours them! And since this is the ONLY bread-type substance that she has been willing to eat since the first part of December......what the heck. I'm hoping that maybe if we keep feeding her these, maybe someday we'll get her to eat gluten-free bread of some sort. Even occasionally for a rare sandwich would be good.

4) And speaking of food........I'm fighting cravings. Bad. Cravings for things like Seafood Alfredo piled with creamy cheese. And garlic breadsticks. And PIZZA!!! We don't all eat strictly with Jen's regimen, but we try to stay pretty close out of respect for her. I think I'm due for some cheesy, gluten-filled binging. :)

5) And one last note on Jen........she was diagnosed with a Vitamin D deficiency. Very common and not real surprising. But like two days after the lab results, we also got an email that stated that Vitamin D deficiencies in children cause stunted growth and weight gains. So........if she wasn't deficient on Vitamin D, she would already be 6 feet tall? She is SO tall for her age that we just sort of laughed about this one. Not applicable here.

Thursday, February 12, 2009

Happy Valentine's Day!



For Mike,

My husband, partner, best friend, and knight in shining armor.

I love you!
Beth

Wednesday, February 11, 2009

Speechless!

SmileyCentral.com


Yep.......I know I try not to post political stuff. Particularly political stuff related to appraising. But this is just too darn important NOT to post!!! With unemployment lines and foreclosure lists lengthening daily.....the last thing that should be happening is a removal of safeguards. That's all I'm going to say. Read the article below and make up your own mind.

Fannie Mae Eases Appraisal Requirements; Too Early to Assess Impact
Starting April 4, Fannie Mae will no longer require appraisals or property inspections from some borrowers who are refinancing mortgages. Instead, Fannie Mae’s Desktop Underwriter system will validate property values through automated valuation models. The new requirements most typically apply to existing appraisals on file and for loans that already contain risk for Fannie Mae.

Under the new guidelines, lenders will be required to enter an estimated value of the house, which would then be compared with an estimate from an automated valuation model. If the two values are comparable, Fannie Mae will grant the borrower an appraisal waiver. If the two are not comparable, it will trigger an appraisal requirement.

Fannie Mae also reduced some eligibility requirements for its Desktop Underwriter Refi Plus program. Borrowers with loan-to-value ratios of 80 percent or less will no longer be subject to a minimum credit score of 580 and adjustable-rate mortgage holders with loan-to-value ratios of 80 percent or less will no longer be subject to a minimum credit score of 680.

Fannie Mae representative Brian Faith said the changes would let “potentially millions of current mortgage holders” take advantage of low interest rates currently available. However, Derek Chen, an analyst at Barclays Capital Inc., believes the changes will have a minimal impact, only amounting to the automation of existing underwriting standards. According to Carla Bandy, a senior underwriter at Everett Financial, it is too early to determine the impact the changes will have. “If you have a Fannie loan and are trying to refinance, there’s probably a comfort level because they already have you in a loan and you’ve made your payments,” said Bandy. “I don’t know if our investors will go along with that because they often put on their own overlays [in addition to what Fannie Mae requires].”

Monday, February 09, 2009

Are you friggin' kidding me??

Today, we made the trek to Olympia (again) to visit with Jen's naturopath (again). But this time, with great anticipation! The lab results were back!!

A little high here..........a lot low there.........ya da ya da ya da. Drastically allergic to all things wheat, rye, and gluten, and all things dairy. Nice to know that we called that one correctly. And.......drum roll here........severely allergic to eggs and GARLIC. The eggs.....okay, as they're on the list of top 6 allergenic foods. But GARLIC!!!????!!! Who has ever heard of a garlic allergy? Is she related to Dracula???

In any case, the labs overall were about what we expected. Thankfully, the things that need fixing are relatively easy to fix. We shouldn't need any IVs of chelating agents to remove toxic metals, and we do NOT have to remove all forms of sugar (including fresh fruit) from her diet (I was really sweating this last one). We're adding a supplement or two to her daily dosage which, at this point, what's 2-4 more pills in a day? Sad.....but true.

And no more eggs or garlic. Go figure!!!

Sunday, February 08, 2009

Survival skills by trial and error

My sense of humor these days has been a tad "spotty." Sometimes its right at hand......and sometimes I can't find it anywhere, no matter how hard I realize, at an intellectual level, that the situation is so ridiculous that it warrants a good laugh. Here.......let me share a few things:

1) We're a gluten-free house, right? No flour, right? WRONG! We have rice flour, sweet rice flour, tapioca flour, potato starch, expandex............we look like a canister factory. There are even MORE choices of GF flours, but so far, I've drawn the line at these. We tried garbanzo bean flour, but it has a nasty flavor. In fact, I carefully read the ingredients list now for anything we buy pre-made. If it has any form of bean flour, it stays at the store.

2) Jennica threw a fit at a basketball game one night this week. A fit like I truly have not seen her throw in a while. She has consistently been having a tough time getting through Grant's basketball games this year, and claims that the sound of the basketballs bouncing on the floor hurt her ears. She is typically considered sensory-seeking rather than sensory-defensive, (something I will try to explain in this blog at some point) and she's been doing a great job talking to us about it. So we've been using various "tools" to help her get through the games. Difficult....but not uncontrollable.

Well, she totally lost it the other night. If she were an elephant, people would have been trampled to death. Thankfully, I got her removed from the game and to a visually-blank and auditorilly-quiet little alcove down the hallway, and then held her until she was able to regain control.

In any case, we survived it and she was able to verbalize that it was the noise that she couldn't handle. This verbal connection is a HUGE step forward. So.......the very next night, of course, we had another game in exactly the same place. This time, we went prepared with headphones. The kind you wear when you run machinery. I was a bit skeptical as to whether she would wear them, but she LOVED them. She marched proudly into the gym wearing her snazzy headgear, and was all smiles through the whole game. An absolute breeze. Go figure.

So.....lesson learned. If she says that something bothers her ears, give her the benefit of the doubt and try the headphones. If anyone thinks she looks funny, they're welcome to deal with her sans headphones.

3) Jen has been very accepting overall of her diet. Amazingly so. One of the few things that has bugged her is having her syrup out of a different bottle in the morning than her brothers and sister. It doesn't make sense to me that she knows she is eating a different type of waffle than they are and is fine with that, but balks at the syrup issue. But, the days that we have syrup, its always an issue. So, I wised up. Her syrup has now been dumped into the bottle that the other kids emptied this week. The older kids have been clued to the little mark on the bottle that will tell them that it is hers, and she will be none the wiser. And, worst-case scenario, one of the big kids gets her syrup. Its not really that big of a deal.........its just that "her syrup" is $10.00 for an itty bitty bottle of organic pure maple syrup. The genuine deal. No corn syrup, no caramel coloring, no artificial flavors. The way these guys use syrup, we'd go through a bottle every few days, if they were to get on a "waffle kick". $40.00 a month for syrup seems a bit steep to me, so the big kids that don't have the severe nutritional issues get cheaper stuff.

In any case, I feel kind of sneaky and deceitful for putting her syrup in a different bottle. I know, I know, I know........I'm really living on the edge, aren't I? :)

Thursday, February 05, 2009

A good plan that went awry

Mike and I have been struggling a bit with Jennica's new vitamin/mineral schedule. The whole regime (Oops.....should that be regimeN?) involves a total of 17 capsules or tablets absorbed at at some point through the day. My original response to this plan was, "Absolutely NO way! Thats too many pills for anyone to be popping, much less a 4-year-old!" And then came the reminder of what gluten and casein do to her neurological system. Followed by a reality check of the amount of food that she would need to consume during a day to get all of these nutrients in her diet. And lastly, the facts of what her body will do if these nutritional needs are not met. So.....here we are. It still feels WRONG to me, but the other options are much, much, much worse.

In any case, we actually started with powdered forms of many of these vitamins/minerals, with the intent of mixing it into her food. Yeah.......whatever. Great intent, but putting it into practice was an absolute disaster. We very quickly learned that we were going to waste hundreds of dollars mixing goop into her food and then having her refuse to eat it. Which accomplishes nothing. The smell/taste of some of this stuff is beyond vile. The marketing campaigns always claim, "New and improved taste". If thats new and improved, the original stuff must have tasted like nuclear waste. In the process of reaching a point that we knew we HAD to get this stuff into, we found out that our daughter can swallow pills like a pro. Finally, a positive point to the sensory-processing disorder--she has a very poor gag reflex. So......we've switched over to pills on everything. No more bad smells, no more bad tastes, and we know that she consumes the whole dose every day.

But, as previously-mentioned, its a total of 17 pills per day. UGH! We've split them up through the day to maximize absorption, but it doesn't work very well if we have to be at a basketball game in the evening, or somewhere else, as certain vitamins/minerals can't be taken too close to bedtime or there IS no bedtime until midnight or so. So......we read up and found out that there is actually no medical reason that the whole dose can't be taken at one time. After a few nights of missing the 2nd half in the day as we scrambled to pull together GFCF snacks for games, grab dinner, pick up girls, get boys to or from the school, etc.........we decided that today I would give her the dose of 16 all at once this morning (the 17th is taken AT bedtime). Great plan.........right?

WRONG! VERY WRONG! Jennica had therapy today in Olympia. Something in that heavy of a dose of something, didn't agree with her. About 30 minutes from our therapy appointment, she vomited all over the suburban. And vomited some more. And then some more. The kind that you instinctively know is going to be EVERYWHERE. As soon as it was all out of her stomach, she felt GREAT. Chatting to me that she needed new clothes. Asking how far it was to Renae's. Asking for paper towels, while I thought to myself that it was going to take a lot more than paper towels to fix this problem.

So, we got everything cleaned up and got through therapy. She has felt great ever since! Once we got back home, I dismantled the carseat (thank heavens that both girls still ride in carseats so I simply had her ride in Tiersten's after the "mess"), I cleaned the carpet, and cleaned the carpet some more, I cleaned the leather seat, I cleaned the back of the driver's seat, and I fumigated. And I briefly wished that I had traded in the suburban today rather than cleaning up this mess. :)

AAAHHHHHHhhhhhhh........The joys of parenthood. The vitamin/mineral supplement schedule is rigorously back to twice per day. Never again will I do those 16 little capsules all at once.

Monday, February 02, 2009

When the brain can't process what the eyes see...

Today went about as we had expected. Interesting, but oh-so-incredibly-overwhelming. I am quickly learning that with the higher level of doctors that we're seeing, we are getting into the people that have a true passion for what they do. This doctor fit that bill! This guy knows, but the complexity of this field of study is mind-boggling, even for someone like me that loves to dabble in really complex topics "just for fun".

So.......here's where we're at. Jennica's eyes can see very well. Her eyes are healthy and she has good vision out of both eyes. However, her eyes and her brain have a communication issue. A big one. Her brain is not correctly "reading" the information that her eyes are sending, or at least not fast enough to keep up. She's obviously able to walk, talk, write her name, and all those basic functions. But when the field of vision becomes busy (such as a grocery store, classroom, basketball game, etc.), her brain gets overwhelmed and confused by the vast amount of visual input and can't sort it all. And so.....we see the breakdown in "organization" in her behavior as she struggles to cope with a brain that isn't keeping up with input as fast as its coming. In order to seek organization, her brain requests input from other areas of her body so that it can rely upon that input to function. Which means that rather than relying on her vision to determine her body position, the brain looks to her movement (vestibular input) to determine gravitational influences, etc. Hence, we get a child in constant motion in highly-stimulating environments. It is her brain's coping mechanism to deal with a difficulty in interpreting the information coming from the eyes. Believe it or not, this makes HUGE sense to us!!! Add that the brain is probably having the same problem with the information coming from her ears (still to be determined for sure, but highly likely), and aaaaaaaahhhhhh..........we have a textbook case of Sensory Processing Disorder. Or Sensory Integration Dysfunction, as it is also sometimes called. Voila. Bingo.

But now........the important part. What do we do about it? We are on the leading edge of science in this field. Sounds cool in theory, but SCARY. We don't really like being in a "guinea pig" position, but to some extent........thats precisely where we are. What if 10 years from now they decide that the way they treated kids with SPD 10 years ago was all wrong? Jennica will have been one of those kids!! But the other choice is to not try to treat her at all? Obviously, that doesn't make sense either! And so, we move forward. With faith. And prayer. And simply hope that if something is wrong, we'll see it or feel it or somehow know. We just have to do the best we can with the information that is available and the best expertise that we can find.

I will admit to being surprised by a few things at this point. First, this doctor is a huge advocate of naturopathic medicine, GFCF diets, and was blatantly supportive of a biomedical approach. He was thrilled to hear that we were already on that path, and believes strongly that it will be crucial to Jen's success. Second, insurance coverage is now a great big question mark. We are travelling onto a "lightly-traveled road." Not because there are not a lot of kids needing these therapies, but because the pursuit for answers is still in process. Hence, insurance companies are hesitant. We won't deny care for our daughter, but boy howdy, we're going to be broke in a hurry. And third, today was the first time in 4 years that we've ever EVER had a medical professional look at us and say that we're going to integrate her care between all the therapists and professionals now in her life, and we're going to work TOGETHER. We're going to communicate, we're going to make sure that we arrange therapy to train her brain in the sequence that is logical to maximize her learning and your money, and we're going to HELP this little girl succeed.

Quite frankly, I cried at that point and a doctor that I had never met before hugged me. I'm overwhelmed at the road ahead of us, the demands on our time with three other children at home and a house and our jobs, and the cost that we know will be involved. But his words today also gave me hope. And that means a lot.

Saturday, January 31, 2009

The complexities of vision

The below story is fairly lengthy, but is from an elderly pediatrician that underwent vision therapy with the doctor we are scheduled to see on Monday. The pediatrician that wrote it is now deceased, but it gives us a rough idea of what we could be facing. I haven't mentioned it in a while, but Jen saw a developmental optometrist a few times in 2007. The results at that time were pretty mixed, but that was a different doctor, and Jen was developmentally less mature. Monday should prove to be interesting!


Your child goes to school, has a good teacher, gets a good breakfast every day, gets love and support, but he is not keeping up with the schoolwork and is beginning to hate school, the teacher, you and himself. You give him some calcium , magnesium and B6. You stopped the milk, wheat, corn, soy, and eggs because you suspected food sensitivities. He doesn't even get chocolate anymore. What has gone wrong? You know he is bright enough. In September he had such enthusiasm and now, after a couple of months, he is giving up.
I recently received a letter from the PR firm of Fleishman and Hillard, of New York, reminding me that it is important that children should be able to SEE before they attempt to READ. I like that kind of no-nonsense, straightforward approach. In my pediatric practice, eye tests were given. If the child could read the 20 line at 20 feet, he had 20/20 vision. I told the parents that getting a good, sustaining kind of breakfast (protein, complex carbohydrate at least) into a child was the best or the main thing they could do to help their child achieve his potential. We looked at ear drums and did a rough hearing test. We checked for anemia and overall growth and development.
All my life I have had an eye problem. I was cross-eyed as a baby but nothing was done. This was in the 1920's: "He'll outgrow it; we'll wait and see." So I was 20/400 in my right eye by the time I was five years old, a condition called amblyopia exanopsia, or suppression blindness. (My confused brain got tired of seeing double so it blocked out the images coming from my right eye. It was a smart move on my brain's part, as it did not know which image to use.) The ophthalmologist surgically corrected the cross-eyed look, but the loss of vision remained. They tried to patch my left eye, but it was too late. Since I could not see well, I took off the patch. Third dimensional vision was lost to me.
A few years ago I visited Dr. Ted Kadet, a developmental optometrist in Seattle, Washington, who helped me improve my vision up to about 20/200. In the last few weeks I have continued this therapy with another O.D. here near Portland, Dr. Roger Tabb. He first checked for any pathology, and then I started to "play" with his toys: I put pegs in holes on a revolving turntable, I turned off lights on a 5x5 foot board as fast as they came on, I jumped on a trampoline while spelling out words both backwards and forwards, and I recited the alphabet while reading a chart (easy), but had to raise my right or left hand, depending upon whether there was an R or L under the letter (tough).
The message he revealed to me was that the eyes are connected to everything that we do: thinking, feeling, moving, planning, and most of the emotions we experience. The eye exam must be more than determining if the child can see the wall. The child must be able to get the whole picture, then he has to sequence that picture, then develop timing and rhythm. The teacher in the classroom must be able to take each of the children separately and get them all to move as one through the learning-to-read process.
Do you remember how easy the alphabet was to learn when you could sing it? A...B...C...D... etc.? The sequence of the letters was easier when it was sung. But it had to be done slowly and correctly at first until it became fixed in the circuits of the brain, and then it could be speeded up into a more rapid time, and then the rhythm was established.
This optometrist, Dr. Tabb, told me story after story of children who were called dyslexic, stupid, or emotionally blunted, but after a few short weeks of this perceptual sensory training, they were able to read fluently, and become cheerful, willing students. Dr. Tabb discovered one youngster, who had been retained in the special ed. class, had a sequencing problem. The boy could read a word in a sentence and then be flummoxed at to the next step. The space between the words was a barrier. Dr. Tabb had him catch and throw back a large soft beach ball as he said the words in a sentence. "The (catch) boy (throw) went (catch) home (throw)." The sequencing, the timing, and the rhythm were all involved, and the boy soon began to read smoothly. (He may have been so bored he had to do something).
Dr. Tabb knows about the benefits of the even blood sugar levels to nourish the brain, but he also knows about the interconnectedness of the visual apparatus with all the other nerves and circuits of the brain and spinal cord. It ties in with what chiropractors can do for patients with learning difficulties.
To give credence to what Dr. Tabb and others are finding with their dyslexic patients, Sandra Blakeslee, writer for the New York Times News Service (NY Times, September 15, 1991), has outlined the recent research. She reports on the work of Dr. Drake Duane of Arizona State University. He states with authority something that we all had suspected: "The nervous system of those who are dyslexic are atypical." That would help to explain why these basically bright children have so much trouble learning to read; something is wrong with the structure or the connections in the cerebral nervous system. Novel approaches to help these children before they turn off the whole academic scene are all appropriate: color filters in the glasses, trampoline and balance beam work, using the phonics method instead of the look-and-say approach.
Dr. Paula Tallal (Rutgers) emphasized that early poor language expression and clumsiness seem to be correlated with later dyslexia. Dr. Albert Galaburda (Boston) feels that dyslexics cannot break down words into basic word sounds. He said, "The role of vision in dyslexia has been ignored mainly because ophthalmologists could find no difference between the eyes of good readers and bad readers."
All this research shows that the visual system consists of more than one pathway into the brain, its association areas and the sections that put what we see and hear into something meaningful for our conscience and higher judgement centers. The brain distributes language processing over many areas. With modern sophisticated measuring devices, researchers have found different speeds of processing of incoming language and visual stimuli. All this reinforces the perceptual sensory way: get the whole picture, then sequence it, then get the timing down, and finally the rhythm. By George, I've got it.
I'm an old guy, but these methods are working. I can go upstairs to get a couple of things and remember to get both. (If you lose your keys or your glasses occasionally that's okay, but if you find them and don't know what they are for you are over the hill.)
Developmental optometry, and its special method called perceptual sensory training, is for young and old alike.
If you have tried all the nutritional changes that you can think of, and the teacher says that your child just cannot "get it," it would be smart to consult with a developmental optometrist. Nearsightedness, farsightedness, astigmatism, strabismus, amblyopia, and poor accommodation can often be figured out by the parents or the ophthalmologist, but how the child processes what is coming into the retina and on back to the brain for organization may have to be left to the optometrist, preferably one who does developmental optometry including perceptual sensory training.

Friday, January 30, 2009

Feeling less burdened

Wow! That was some rant in my last post here. I meant every single word and won't apologize for any of it, but also recognize that the people that really need to read it never will. But I knew that when I wrote it and it was a form of therapy to "let it all go."

In any case, I allowed myself to continue to stew and brew yesterday, but today, I'm pulled myself up by the bootstraps and given myself a needed kick in the butt. After all, I have much to be thankful for. Regardless of the issues that we are facing with Jennica, she is physically healthy and we are in a great position to help her make great progress. I also am very fortunate to have a very involved husband in this process, which many of my acquaintances dealing with similar issues most definitely do not! And my other three children are thriving in their endeavors, which allows me to focus more time on Jen and the myriad of appointments, treatments and therapies. There is so much to learn......

So..........I'm "bucking up." For now. I'm sure I will feel the need to unload another rant at some point. :)

Wednesday, January 28, 2009

Advice to the holier-than-thou

When you have one of those children, you are a constant target for unsolicited advice, looks of disbelief, and other things from the rest of the human population that really grate on your nerves. So, its been one of those days, my sarcasm is at its absolute worst, so you get to be the lucky recipient of my advice. I'll try to hold the profanity to the absolute minimum. And, since its been a while since I've reminded you poor helpless readers that keep showing up here, this is MY blog. You came here voluntarily and you can leave the same way. :)

1) First, if you are a person that feels inclined to give advice to a parent with a special needs child.......don't. Unless you are in a professional position to do so. No matter how well-intended the advice is, I maintain that 99.9999% of it is worthless, and probably has already been tried. Plus there is the little problem that the advice givers almost always wait to give the advice when the child is "putting on a show" somewhere. Frankly, if my daughter is wailing at me about wanting her 90th treat during a basketball game and I am holding my ground telling her "no", I don't really give a darn what you think I should do. Deal with it. And the fact that I gave her the first 89 treats trying to avoid this scene does not mean that I'm a bad parent. It just means that I'm very tired and was.....well.......trying to avoid this scene.

2) If my child is on a special diet meant to help her, do not act like I'm abusing her and do not ask rude questions such as, "What CAN she eat?" Nobody in their right mind goes out of their way to place their child on a restrictive diet without a good reason. Its a heckuva lot of work for the parents, and can be astronomically expensive to feed a child a restricted diet. And, while this isn't really "fun", it is also not abusive to feed your child fresh vegetables vs. hamburger helper. I'm not looking for your sympathy, but view my child's diet similarly to what you would a diabetic diet--it is medically necessary for my child's health. And do NOT sabotage my efforts by slipping my child one little cookie when you think I'm not looking. Just as an example, believe it or not, a little bit of gluten for a gluten-free child can do incredible damage to their GI system that takes days/weeks to reverse. This is not a game! If you are seriously interested in the health reasons behind our decisions, I'd be happy to share some information. Otherwise, bite your tongue. She gets plenty of cookies/candies/junk that falls within the parameters of the diet and I have to say, some of it tastes darn good. People think they could recognize GF food? Bet I could fool them!! :)

3) I don't want your sympathy. Period. This is my child and she has Sensory Processing Disorder. It is part of what makes her who she is, and to deny the SPD is to deny the person she was meant to be. My husband and I are dedicated to helping her succeed. This is not a terminal illness, so she will likely lead a lengthy life with this disorder. Don't try to convince us that we should just "relax" or that "everything will be fine". We get one shot at this. We can't wait until she is 12 and say, "Oh crap, lets go back to when she was 4 and do that therapy thing." I know of no parent that regrets doing everything they could for their child as early as possible. I know of lots of parents that wish they had done more. If we screw this up, it won't be you that she's living with at age 32, so nobody has a bigger stake in this than us.

4) If you want to help us, learn about SPD and how it applies to you. We ALL have sensory issues. Its part of what makes us human and different from one another. I can't tolerate the feeling of cottage cheese in my mouth. Cold....lumpy.......EEEEEWWWWW. That is a sensory issue. Mike hates the sound of chalk writing on a chalkboard. To the point that it raises goosebumps. That is a sensory issue. We all have them. It becomes a disorder when the sensory issues are so overwhelming that they interfere with normal daily functioning. Be attentive to other people. Sensory issues are everywhere and easy to spot, once you know what to look for. MANY children/adults with SPD are living life undiagnosed, and wondering why they are different. SPD doesn't go away, but with understanding and therapy, most people can learn to live normal lives. An auditorally-sensitive person may never be able to tolerate working in a noisy sawmill. A tactilely-sensitive person may not be able to tolerate working long days cutting hair due to the feel of the hair on their hands. But this is how we ALL choose our careers and make our life choices........we avoid the things we don't like and gravitate towards the things we do. It can be that simple. With comprehension and understanding of the disorder.

5) Lastly, if I am flippant, sarcastic, or rude to you--don't take it personally. The few below are actual questions I remember being asked with my own sarcastic responses below:

Q: Where's Jennica? Didn't you bring her to Dane's graduation?
My A: "Yeah.....but she's duct-taped to a flagpole out in front. We should probably go get her." (I got a great "look" for this one! :O And, heck NO, we didn't take her. Mike and I actually wanted to watch our son graduate rather than chase her around the gymnasium. )

Q: What CAN she eat?
My A: "Cashews. She eats a lot of cashews." (Folks.........there are a LOT of foods in the world that don't contain gluten and dairy products. Expand your horizons a bit.)

Q: We'll pray for you.
My A: "Great! God is already doing great things for us. He has given us the ability to read books, find specialists, and make solid decisions about the best course of action for her!" (This is not meant to offend those that DO pray for us. It is just a reflection of my sarcastic annoyance for people that seem to sit around helplessly waiting for God's healing hand. I believe that God gave us the brains to help ourselves, too. Its sort of a balance-thing for me. Praying for the money to pay for all the non-covered therapy tools/dietary supplements/books/etc. would be good!)

So forgive me a little sarcasm. We deal weekly with very heavy choices. This week, we learned that our daughter has a coping strategy for spinning that we never knew existed in anyone, much less her. (It allows her to shut out significant vestibular input to the inner ear and integrates with her vision. Confused? Join the crowd. We see that specialist on Monday so stay tuned.) We live a gluten-free/casein-free diet in this house and there are no days off. Pizza on a Friday night after a long week is not an option. There is no "run by McDonalds" on the way home. (French fries are soaked in milk and rolled in wheat flour.) We have four children and a minimum of 4 athletic events each week, not counting practices. We both work full-time jobs (mentally-necessary as well as monetarily). We are currently awaiting results on a wide variety of lab tests that will help us chart our course over the next 6-12 months for her physical health. She takes a massive amount of vitamins/minerals daily to replace what is not available in our watered-down, pesticide-ridden, antibiotic-filled food. (Short of moving to Timbuktu, starting a farm, and living in an old school bus, I haven't figured out a way yet to improve our food quality any more than we already have.) The best results for SPD and related neuro-based disorders come from an integrated medical approach. The body must be in its absolute best physical health for the brain to receive all the nutritional support it needs to get all the sensory input flowing through the synapse connections necessary. And while we get every part of the body functioning correctly, we continue to explore and define her strengths and weaknesses and discover where we need to focus our therapy. So.......forgive my sarcasm, smile, and talk about what a jerk I am later. Frankly, I'm too busy focusing on my family and whats truly important to care what you think anyway. :)

Tuesday, January 27, 2009

Who I am?

I've suddenly found myself in an odd place. Somehow..........I'm no longer sure where I fit in life. The world has shifted around me, so while I have not moved, my position in it certainly has. Let me explain:

First, there is the economy. Housing prices have dropped nationwide, jobs are being lost all over (just lost two mills permanently in our neighboring city yesterday), and people are scrambling to find stable financial ground. My job as an appraiser has always been mostly a positive one. People buying homes, people refinancing to remodel or do something else they want to do.......an appraiser has a hand in all of that and people are excited to see us arrive, as it means that their dreams are moving forward. Now.....with the economic downturn, my job has a negative side to it that has always been there on rare occasions, but is now a frequent occurence. Valuation of homes hanging on the brink of foreclosure, valuation of homes already foreclosed upon, refinances on homes to pay off other debts, sales of homes where the home is not worth the asking price........it goes on and on. I am legally and ethically bound to give an honest opinion of value, but it is pretty common these days that nobody really wants that honest truth.

And second, I am now spending a LOT of time caring for Jennica's needs. Shopping/cooking a GFCF buffet of foods for her, collecting lab specimens and delivering/shipping them, therapy exercises, brushing exercises, running her to and from appointments, meeting with teachers, making more appointments. In most ways, she fits the definition of a "special needs" child. Which makes me a parent of a "special needs" child. But if I would dare to attend a support meeting for a group of special needs parents, I wouldn't fit. My child communicates normally. My child potty-trained normally at age 2. My child races around a playground and swings from the trees with the greatest of ease. A "blip" in her sensory processing, no matter how big of a blip, is still just a blip compared to a parent that is carrying their 8-year-old to the toilet, pushing a wheelchair into McDonalds, or living between hospitals.

And, so, my life has changed and I'm not sure right now where I quite fit in. It might take me some time to find my identity in uncharted waters.

Wednesday, January 21, 2009

Thought-provoking

"When I was in grade school they told me to write down what I wanted to be when I grew up...... I wrote down happy. They told me I didn't understand the assignment. I told them they didn't understand life!" ~Author Unknown~"