When my now 5yo was 3, she kept complaining that her head was hurting...this went on for about 2 weeks before I decided to take her in to see the doctor.

He did the normal eye exam and she 'passed'...but because 3yo's should not be complaining of headaches...he suggested I take her to a Pediatric Opthalmologist...do you know how hard it is to find an Opthalmologist that would see a 3yo?  It took me 2 months!  But, after I found one, and took darling daughter in...We found out that she had the beginnings of 'Lazy Eye'...She walked out with a pair of glasses on order and a grateful mom...The Opthalmologist had told me that if we had not brought her in...and waited until she had started school...darling daughter probably would have had to wear an eyepatch to stregthen her 'bad' eye...and we all know how cruel Kindergartner's can be to someone who is 'different'. 

Thanks for writing.

Tammy Cedo

Oh, so nice to see Tammy writing in about her darling daughter.  I know that she lives in a major metropolitan area too.  Here in western Colorado I have learned for the first time how difficult it is for many, many people to get the expertise they need.  That is one of the reasons I had the idea to start Lumigrate, so it is AWESOME and an honor to look above me here tonight and see two wonderful and brilliant women who have never known of each other being able to learn from each other.  I know Lynn Hellerstein, and she is really receptive to the input of other people related to what THEY know. 

Here's the nutshell of my story:  My mother had a degree in elementary art education, my father in psychology but he was a numbers guy who had chronic fatigue syndrome in the 1930's so got the fastest degree he could for the fizzled brain he had after the illness: His brain was just never the same again for engineering.  Then World War II happened, and he joined ROTC and wanted to just hurry up and graduate and get 'out there' serving. 

I learned to read before I went to kindergarden, and was SO bored and remember thinking 'these kids don't know the alphabet?' ... why am I even here? But it was fun and social. First grade went by without incident, my greatest memory is of the first day when our teacher had a bright red BIG pencil for each student at their desks standing on end.  

By second grade the teacher identified me and two boys to go to Denver with the principal and be tested for learning problems. What she picked on I'm not sure; I remember not liking to not use my finger to keep my place and having difficulty reading out loud -- losing my place.  I was tested but the district didn't have anyone on contract to interpret the results, only the technician to administer it.  My grades were good or okay for years and gradually I struggled more and had more.  My self esteem suffered as a result. 

My mother became an elementary teacher when I was in second grade and got a job at the same elementary school I attended. Ugh! Her friends were my teachers and would encourage her to hear what my IQ was but she refused to know. It was just the way she was, not a very involved mom but very committed to her work. 

My dad didn't go to conferences because, like me, he'd developed undiagnosed fibromyalgia and was having lots of troubles with migraines, had a fairly 'big' job, and had to drive 45 minutes into the sun twice a day. He likely believed that since my mom was a teacher/expert and talked to my teachers every day in the teachers lounge, where they would all sit and smoke cigarettes and drink coffee after school .. and LAUGH, complain, etc., that he didn't need to intervene.  

They were GREAT fun -- sometimes they'd come to our house for "FAC", and some were really amazing teachers.  As was my mother -- she believed in the 'three Rs', discipline, structure, etc.  I always knew which classroom was hers each year after I was older and returned to ask her a question or needed money or something, because there would be noise coming from all the doors and then HERS ... quiet....  

She took advanced, progressive training in what was essentially OT for learning disabilities, something called 'sensory integration dysfunction' -- Dr Hellerstein's clinic's OTR supervisor is certified in SI treatment.  My OT program had a big-wig instructor in this speciality area and determined I had a pretty good case of SI Dysfunction.  My mom actually screened every student in the school and knew I had some issues but it just wasn't of a concern to her (or me at the time). 

She also liked teaching the lower ability group -- our class was split into three classes. I typically was in the high one, in fifth grade they combined us with sixth and I was in the middle-high group that year and in sixth went back up to the high group.  She also knew that I needed to go to the specialists in Denver that are like what Lynn Hellerstein specializes in.  In junior high I wasn't always on the honor roll anymore and in high school I started taking the easiest math in order to get good enough grades to be able to get into college.  I graduated in the top quarter of my class.  

I struggled in college desperately and remember actually wishing I would somehow die one day walking to a final exam.  There was a train track and it was snowy and I didn't know which I'd prefer, but I certainly didn't want to sit for the final.  Fortunately, it had snowed so much the college was closed so I had another two days to study.  I didn't get very good grades -- my self esteem dropped further.  

I decided to stop spending my savings on college until I figured out what I wanted to study -- I attributed it to a lack of desire not ability.  I set my mind on working for two years because I'm not a 'quitter'.  I fell into a really good job and ended up taking about ten years off, but that was partly a delay because, like my father before me, I'd come down with chronic fatigue syndrome (CFS) when I was 29 and it took a while to recover from that.  

The 'blessing in disguise'/silver lining was that the CFS led to weak eye muscles which made my learning disability worse so things REALLY were jumping around on me when I read.  I had a friend who was getting a   PhD in psychology who encouraged me to take his Intro to Psyche class and get back to going to college. I wasn't getting an A in the class, and I needed LOTS of As to be accepted into the OT program, so he told me I could get extra credit by helping run his dissertation subjects.  His project entailed studying faux jurors who watched a recorded trial proceedings and then answered questions; some batches had a camera on them as they watched, others did not.  He went through it all with me one evening and I took the test so that I had done the whole process and understood everything involved.  I went home and he called me right away: I'd scored virtually a perfect score! So why was I not doing that well on the tests in his class? Some of it was from information in the text book that wasn't covered in a way I could hear it.  

So I looked in the phone book's yellow pages and saw there was an eye doctor / O.D. who advertised they did vision therapy.  He wasn't certified in all the things like Dr Hellerstein is, and he was training his wife to be his vision therapist, but I worked very hard at what they assigned me to do at home.  Essentially it was all about doing things that were very hard for the visual system and then when you're in the regular world your brain's used to doing much harder so the real world is easy! I also was given a bifocal to blow up the readable information.  Two pairs, one for the computer with the line higher.  (I now use the progressive lens and only have one pair of glasses, but they also have a prism in them to warp things the way my brain likes to see things and a bit of pink tint as that counteracts the way my brain reacts to fluorescent lights. Expensive but they are really so helpful and make my days SO much better!) 

I did well enough in school to have a 3.5 or so on my most recent 45 credits and made application to OT school, which was very difficult to get in back in those days. I did well in the program; the students all were surprised when it came to graduation and I was not in the elite groups that get the green or gold (school colors) but a regular 'blackbird' as I referred to it.  I actually protested the segregation and attended in the audience and didn't sit or 'walk' with my class.    

I did well at my internships at the VA, one of which was considered extremely difficult.  I was hired by the nation's biggest therapy provider and was assigned to be the lead/primary/only OT in a skilled nursing facility on the west side of Denver.  I'd not learned anything in school or at the VA about Medicare billing and documentation and I became quite a problem for the company.  They moved an OTR to be at the facility part of the day and the supervisors and managers were having to spend extra time with me.  Fortunately the new area manager they hired was a woman who had been my study partner in a one week extra course I took in Assessment of Motor and Process Skills, and I'd used the patients she had at the MS society at her previous job to practice on in order to become certified in AMPS.  

So she knew I was hard working, responsible, conscientious, etc., and her husband had learning disabilities and went to a woman named Lynn Hellerstein, where they did vision therapy etc.  These types of doctors and therapies are typically not covered by insurance, so I was paying 'out of pocket' for this as well as much of the treatment for chronic fatigue.  I actually had fibromyalgia and wasn't reporting 'pain' -- it took me a long time to realize that the tightness I had in my neck and back, making me ALWAYS wanting a back or neck rub, was 'pain' not just 'stiffness'.  

Once again, I took this very seriously and compliantly did my homework, despite that I was working very long days.  I stopped doing one of the activities because it was opening up my peripheral vision and I was having to drive hours per day after dark in the winter and it was just inundating me -- I was just SO fatigued and couldn't deal with the added lights in my brain.  I was put on a medication that helped my pain but made my eyelid muscles close, and the doctor wanted 90 days to see if the side effect went away, so I drove hour upon hour holding one eyelid open (my left) and driving with my right hand on the wheel.  I had a stick shift in a big Pathfinder at the time, or my company vehicle, this was right when I started working for the driving company which entailed my driving between three offices in two cities. I didn't continue on that medication but found another one which helped somewhat and eventually was diagnosed and medicated in a way that worked overall and I was able to increase my function, add more alternative and functional medicine treatments, then drop back the medication and 'allopathic' medications.  For a while I was on no medication but I find I do better sometimes with some pharmaceuticals. One of them is a muscle relaxant and I can only take it at night because my eye muscles will relax and I can't train my eyes where they need to be looking.  Which is fine, I get by fine.  

My learning disability still makes it harder for me every day in many ways but I'm used to it. When people get to know me have to figure it out in some ways.  I almost hit a curb the other month driving a friend and now he's always watching out when I'm driving.  I don't see icons well on the screen and isn't THAT ironic that I am on the computer and this website all the time! People see what I have accomplished and don't realize how much help I've needed to teach me or do for me things that I likely otherwise would be able to do!  It takes me a lot longer to do things than it would otherwise so I cannot be as productive as I would be otherwise, and in the therapy/medical world where "productivity" expectations are what they decide if you're worth employing or not, it's been a definite problem for me.  Ironically, the people in therapy world/medical world tend to be the least understanding about it of all people I've encountered!  

I hope that my personal story serves to motivate many MANY people to think about that they might have something going on that they don't know is 'wrong', or their children might.  I encourage parents and those who advise people, such as managers, to be aware of such specialists and hope that everyone who has a need for such things somehow obtains it.  I hope in the future these things are covered by our payor sources.  "If in a perfect world...."  

And to all the mom's like Tammy who go out of your way -- kudos.  Particularly when you are with a chronic health condition that limits your energy and finances and all that so many of us know so well.  To dads, l hope you do the same: I remember overhearing mine trying to let my mom know he was seeing something going wrong when helping me with my algebra homework. And most of all to the adults who might have something along these lines, there's no time like the present to start learning about it and doing what you can with the resources you have.  

Lots of wonderful connections forming here everyone -- again thanks to Tammy for writing such a GRATE comment! ~~ Mardy

PS -- and I certainly appreciate Lynn's compliments.  Coming from her, that's like having the queen of England say she likes your purse or hat or something!  

 Dear Tammy

Thank you for your beautiful sharing of a very important experience.  There is more to vision than 20/20- millions of kids are missed by vision screenings.  its estimated that 1 out of 4 kids have vision problems.  Over 18 Million kids have not had eye exams before school, even though vision is our dominant sense for learning.

I'll share my own story as to why i became so interested in the vision field.

From day 1 in optometry school, I knew that there was more to vision beyond 20/20, due to my own struggles with reading.  As an 8 year old, I remember seeing my sister snuggled on the couch reading her favorite book.  She’d read for hours and hours and hours.  She loved to read.  I'd pick up my book, sit on the couch, and after a few minutes, I'd be sound asleep.  I knew how to read, had plenty of books to read, wanted to read, and saw well; yet after 10 minutes of reading, the print would blur, the letters would dance around, my eyelids became heavy, and then it was "lights out" for me.  

I never understood why my sister took books on a vacation.  Books on a vacation?  What a waste.  I go on vacation for fun!  Reading was work.

I quickly learned to avoid reading, even through college and optometry school.  Nothing I’m proud of, it’s just the way it was.  Luckily, I was able to compensate. I was organized, motivated to excel, knew how to take tests and made good grades.  

After experiencing vision therapy at the age of 40, I now love to read.  I look forward to vacations... not just for the fun and relaxation, but it’s the only time I have to read for pleasure now!

Many of the patients I treat in my practice are not as lucky as I was.  They don't have the skills to compensate. They struggle in school: they can’t finish a book, flunk spelling, dread writing, forget their math facts, feel “stupid”, avoid tasks, lose confidence and eventually give up.  Parents are frustrated watching their kids struggle. 

When vision problems are diagnosed, vision therapy can often lead the way to creating successful, confident students and athletes.  What a gift — to be a developmental optometrist and be part of this beautiful learning process.

All kids should be visually evaluated by an eye doctor by age one, then age three and then yearly thereafter. I've included some info as to how to find an eye doctor who evaluates children!  Look for someone who really has experience with kids!

For infants under 1 year old, there is a great program through our national American Optometric Association Foundation called Infant See.  It is FREE!  I've cut/pasted some info below. 

InfantSEE®: Establishing a Lifetime of Healthy Vision for Infants

In an effort to encourage infant eye and vision assessments and to ensure they are accessible to everyone, Optometry's Charity™ - The AOA Foundation and The Vision Care Institute™, LLC a Johnson & Johnson company, created InfantSEE® a no-cost public health program developed to provide professional eye care for infants nationwide. Through InfantSEE®, optometrists provide a one-time, comprehensive eye and vision assessment to infants between the ages of 6 and 12 months, offering early detection of potential eye and vision problems at no cost regardless of income or access to insurance coverage.

To find a developmental optometrist for children, check out the find a doctor link at:

www.covd.org

Please feel free to visit my websites for more specific info on vision at:

www.LynnHellerstein.com

www.HBVision.net

Lynn

 I know this blog is about kids vision- but the new hot movie Avatar is a big topic in the vision care world.  Don't be surprised if Avatar makes you sick!  there are neurological links between the balance and visual system.  the demands of watching Avatar in 3-D has cause nausea and discomfort in some views who have problems with coordinating their eyes together, uncorrected prescriptions, lazy eye, ...

If you want to learn more, take a look at my blog

lynnhellerstein.com/2010/01/from-dr-dom-maino-avatar/

Hi Lynn!  Thanks for stopping by and in the fututre when the other forums of Lumigrate get 'going' with more experts (who are pouring out of the woodwork you might read in MY blog of today (which is January 23 I think today?), I'd like to hopefully remember to have you contribute there and link to your blog from something about balance and vertigo when that's written about by someone.  (Needing to get the balance PTs on that -- you know any who might want to write?). 

A few years ago I had this really intersting patient... 50ish woman who had been hit on the head by a beam falling at her 'big box' workplace... so mild head injury, neck etc.  The PT / balance specialist and I had really made wonderful progress, neuropsyche with Chris Young who you see on Lumigrate.com video (FREE by the way and an hour long).  She'd even been so much better that she had a spring in her step and ran out to get supplies to cook us a late lunch one day.  Then that weekend she was feeling so much like her old self she didn't think about the James Bond movie would be LOUD and BRIGHT Flashes with gunfire... and she was literally set back for a whole month.  And since she was worker's comp, as you might know, there are timelines.  So it actually, in my opinion, really affected her long-term outcome. 

Thanks for stopping by and bringing another aspect to our awareness of your expertise.  It's certainly more than just children and acadmemics!