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 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 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


"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~"

Saturday, January 17, 2009

Time marches on

Time is definitely marching on here in the Stevens' household. We came through the storms and flooding unscathed, and just mildly annoyed by the unexpected schedule changes. Most of the changes close to home involved road closures due to landslides. I've NEVER seen so many landslides! The clean-up continues, but all roads are now open.

Dane continues to wrestle and is at tournaments most weekends and some weeknights. Its a bit of a brutal schedule some days and, of course, I worry about him. Thursday night he was at a tournament and didn't get home until 11:00 pm. Spent all day at school on Friday, with practice after school, flew home for dinner, and then back to the school to play in the pep band for a basketball game. This morning, he left home at 6:00 a.m. for another wrestling tournament and, though we've talked to him via cell phone after each match all day, he's still not home and its 8:00 p.m. I don't expect to see him for a few more hours. While we would love to attend more of his tournaments, we've found that its just not practical. The tournament itself often lasts for 10+ hours and if he's doing well, he could wrestle up to three times in that 10+ hour period. WIAA rules require a minimum of one hour between each match. So........there is a LOT of waiting involved. Even when adults can be that patient, his sisters are definitely not! :)

And, Grant had his first basketball game today. The boys in his class have played pee-wee basketball together for several years already, and they have always done well. This year, they appear to be starting off with a bang. They won 45-15. Grant was pleased to score 7 points. They're a very athletic bunch with 2 boys over 5'10" (not bad for 7th graders) and they play a pretty fast-paced type of game. They're going to be fun to watch!

Tiersten seems to have suddenly taken a huge jump in maturity again. Its amazing how it always seems to go in spurts. Maybe it was that conversation about thong underwear. :) In any case, its fun to see her growing and changing. She's beginning to obsess about her ballet recital in June, and regularly asks when her costumes will be fitted, as she knows that they have been paid for. I think I'm going to get a calendar to hang on her bedroom wall with all the dates marked, so that she can count the days at leisure.

And Jennica, last but not least, is progressing. I think we've finally found our niche with the gluten-free/casein-free diet. We still haven't found a bread that she'll eat, but we're simply working around it. We've finally got a large number of foods and meals that she's eating regularly and, as much as I hate to admit it, its not nearly as tough as I had convinced myself it would be! We're actually ALL eating more of her food, which is truly better for all of us anyway. Basic meats, fresh fruits, fresh vegetables........nothing wrong with that! Obviously, we're eating out a lot less, which also doesn't hurt us any! We've also found a coconut milk yogurt that she loves, GF pretzels, GF peanut butter crunch cereal.......which all helps fill in the holes of her meals for things we don't do home-made. And the results? She hasn't turned into the perfect child, if thats what you're wondering. And I don't know quite how to explain it other than to say that her behavior is much more "raw". There is less "fog" in her reactions to things. Her anger and frustration is stronger at times, but she's expressing it more clearly. When she's happy, she's truly happy and able to express that as well. The mood swings are still wild, but at least now, we feel like we have CLEAR mood swings. I don't know how else to explain it. All the other parents with which I communicate about GFCF diets totally understand it. So, now we begin the next phase, which involves testing her system for a gazillion different issues. We've already submitted one test, and are waiting for results. We have three more to go, and then it will be a 2-4 week wait for results. I'm looking forward to it all! It will certainly be interesting to see where we're at.

And lastly, I guess with a chance to finally absorb the education, OT, diet, and all the other changes we've made in the last 2 months, I can finally see that Jennica has a genetic vulnerability for SOMETHING. There is no other way to explain that her biological mother, full brother, and half sister all live in different homes, in two totally different areas of the country, have no contact between them, and yet all have somewhat similar neurological conditions. From what we know, Jen is by far the highest-functioning. But an objective, scientifically-based outlook demands that we recognize that there HAS to be a common genetic link. The success of thousands of parents across the country in treating these conditions keeps us motivated that we need to continue. We're on the right track, so lead, follow, or get out of our way! :)

Friday, January 02, 2009

Conversations for which I am ill-prepared

Tiersten is a very bright and observant 5 1/2 year old with a desire to be 15 yesterday. No matter how hard I try to keep her a little girl, I keep finding myself in conversations with her that SHE may be ready for.........but I am certainly not. Like yesterday.....

Walmart has a habit of putting the skimpy underwear right on the aisle. Walking by yesterday, Tiersten's eyes landed on a pair that, due to the way they were folded on the hanger, looked like little panties. The print on the fabric was something very cute-sie, and they caught her eye. So, of course, she picked them up. Turning to Jennica, who is hanging over the side of the cart, "Hey look, these are little panties!" She was correct on the "little" part, but what she meant was panties for her size, which they were definitely not. When she asked me if she could get them, I pointed out that they were actually for "bigger girls." She gave me a quizzical look, so I had to point out that the string sides were folded and clipped in the hanger, so they would actually be too big around to fit her.

And then the moment of truth.......she turned the hanger around. Immediately, the brow wrinkled up in puzzlement. The question was unavoidable. "Why don't these panties have a back?"

I took a deep breath and decided that an honest question deserves an honest answer. "Well.....that string part in the back is supposed to go in your crack."

Big grin here in response. "In your BOTTOM crack?"

I had come this far. "Yep. It's called a thong." I started to move the cart on down the aisle.

She quickly hung them back on the rack, she and Jennica shared a look of.......I don't know......sisterly humor maybe......and they both absolutely cracked up laughing. There were a few quiet comments exchanged between the two of them about bottom cracks, and more giggling, all of which I chose to pretend not to hear in an effort to let them work through their new information.

UGH! I am SO not ready for teenage daughters. Is there a class I can take before they get there? Actually, I might need more than one class.

Thursday, January 01, 2009

Happy New Year!

Happy New Year All!

The last several years, Mike and I have always attended New Year's Eve parties with friends. This year, we were HOME! While a little boring, it was nice! I think we're still reeling from the wild schedule of December and we're still trying to get re-fueled. In any case, it was great to have a relaxing evening. The boys were elsewhere, so it was just us and the girls. :)

And on to 2009!! So much to look forward to!!

And since I haven't updated since Monday, yes.........Jennica came out of her "bad mood" at her occupational therapy appointment, as we knew somehow that she would. While we had attempted to mimic the OT exercises here at home in an effort to snap her out of it, I'm having to swallow my pride and admit that there IS a reason that our OT is an OT........she's FAR superior in recognizing the neuro-systems needs for specific types of sensory input and applying them. Even she was somewhat amazed at the level to which Jen brought to the trapeze bar on Monday! She swung on it back and forth some.........but what her brain really seemed to demand was the SPINNING! The trapeze is rigged on a swivel of sorts, and Jen really ripped it and spun and spun and spun. And then she tipped her head back and closed her eyes. Spinning like this with your eyes shut is the #1 most intense vestibular input, and Jen just smiled and soaked it all in. Fascinating to watch! She also participated in a variety of other therapy activities, and her mood improved continuously throughout the rest of the day. I know.........I don't totally "get it" either, but I'm learning!!

Also, one interesting sidenote........The little beast was in her very worst form on Monday morning. Breakfast has been our most difficult meal on the gluten-free/casein-free diet. She has refused virtually every form of breakfast we had come up with. All she wants is bagels or oatmeal which, of course, are both full of gluten. And, no, she flatly WILL NOT eat the gluten-free form of either. BLUK, is her response. So...........Monday morning, I had reached the end of my rope. She was HUNGRY, refusing food, and getting nastier by the minute. So.....I said "To heck with it!" and pulled out the apple-cinnamon oatmeal. She chowed two bowls of it, plus a banana, and an orange. This was the first blatantly gluten-filled food she had eaten in almost 30 days. Two hours later, we got out of the suburban at our therapy appointment, and her face is BEET RED.......a sign of a gluten reaction! We walked in the door and our OT took one look at her and said, "WOW! What did she have to eat this morning? She's in a full gluten reaction!" Confirmation of what I had already noticed. So..........I guess this is positive reinforcement that she needs to remain off the gluten! Obviously, the kid DOES have problems with gluten! Its just fascinating to me that less than 30 days of being on a gluten-free diet.......and she would react so quickly and strongly!?!? WOW! She showed other physical signs of reaction also, but less blatant to the outside world. She has been, once again, gluten-free since Monday and we now have the proof that she NEEDS to remain so. Once again........I'm learning! :)

Happy New Year!