Robyn’s Rules for Visual Disorder – 8 Guiding Principles for Parents

The following was submitted to The VisionHelp Blog by Robyn Martin who, through her own personal experience growing up with strabismus, was able to recognize some of the tell-tale behaviors of this visual disorder in her own young son. In this heartwarming story, Robyn shares what it was like to suffer from strabismus, find help with vision therapy and what parents should look out for in young children who may have this binocular vision disorder. The authors of The VisionHelp Blog are featuring Robyn’s Rules for Visual Disorder with the hope that her story may help other children with strabismus find access to vision therapy care. 

I was diagnosed with strabismus at a young age, and my parents were told it was too mild to treat.  I knew that my mild version of “crossed eyes” was the reason I always felt my nose was in the way when reading and writing.  I did not realize it affected me in other ways.  Either doctors did not know or just did not tell my family that there may be some mild difficulties in other areas as a result of this diagnosis.

As I got into high school, I began to understand more about the concept of depth perception.  I was able to connect that my crossed eyes were responsible for my stumbling on stairs and sometimes missing things like door handles when I reached.  Still I did not understand that strabismus might have affected other areas of my life.

I was a good student and appreciated by my parents and teachers.  I was socially capable and did fine as far as making friends and getting along.  Nothing unusual was ever noticed by my parents or by any teachers.  Yet, I sensed (but did not verbalize) that sometimes I did things that didn’t seem like me.  At times I worked much harder than the product would indicate.  Basically, I felt just a little bit different than my peers at times.

Slight difficulties showed up in handwriting and art in that my work always appeared sloppy or careless, even though I probably spent more time on it than my peers who turned in neater work.  Sometimes I was too excited and silly, such as chasing kids on the playground when they didn’t want to be chased.  I was just downright awkward when trying to learn to swim or follow an aerobics class.  I think it is important to note I was trying.  I was not afraid to go in the water or put my face in.  Effort was there, coordination was not.

Over time I accepted that some of these things were just talents that I did not have and some were just my personality.  When I recently discussed my shifting eyes with my optometrist, he suggested vision therapy.  I had no idea that anything could be done.  He gave me a referral and told me to at least  check the website.  He said I would find that I was reading all about myself. 

When I went to the website, many of these subtle things of the past seemed to take on new meaning.  After my vision evaluation and additional reading on the topic, more of my past seems clear.  Now I believe that my inability to relax on a bike has nothing to do with me being a “Nervous Nellie”, my rolled shoulders and tendency to lead with the left side of my body are more than just poor posture, and some of my subtle difficulties have been more than just a lack of natural talent.

I am fortunate in that I was able to achieve what I wanted in school and life.  This is all a lesson for me and exciting to piece these things together now.  Even though nothing seemed unusual to my parents or teachers, I really felt there was something different.  While my college roommate was studying special education it seemed there was so much talk about ADHD and medications. I told her that all this talk of ADHD and learning disorders made me think that if I were a child now, I would possibly be misdiagnosed for what I thought was just my personality.  I didn’t understand as I said it that the reasons I was saying it might be related to strabismus. I questioned her on the subject and wondered out loud if some kids are getting medicated for a condition they do not have.

Now I am the mother of two children.  I have noticed in my older son some subtleties that remind me of myself as a child.  I have thought that he must have inherited a bit of my “quirky” personality.  He is a bright child, but has difficulty with impulse control.  He has mild difficulties with fine and gross motor skills.  It is enough to have needed physical therapy and occupational therapy evaluations, but not enough to test abnormal or require therapy.  It has been explained that he is within normal limits, but at the later of end of normal with regards to motor development and that’s just his norm.  We all have our strengths and weaknesses.  Again, like me, it seemed it was just not a natural gift for him.

As he has progressed through preschool, it is clear that he is very smart yet struggling in some ways.  His teacher says he “lacks focus” yet is so capable and smart.  She recommended an evaluation to test for ADHD and other learning disabilities.  As I started to see my own past in light of the effects of strabismus, I started to realize that he did not inherit my personality so much but probably my eye problem.

He was examined by our doctor and tested normal.  This is a doctor who I trust and who looked extra hard for a problem, given my history.  He did not find it.  I had a second of relief that he did not have a vision problem, but knew before I reached that car that it was not possible.  I took him to the specialist that our own eye doctor had recommended for me.  She found he has accommodative esotropia.  Essentially he has an eye turn that is intermittent and shows up with close-proximity work or focus.  Though his behaviors were similar to some of mine, his problem was not as easily detected.  We now know that he sees blurry images and sometimes double up close.  He is going to get bifocals and possibly vision therapy.

We are happy that our child’s problem has been discovered before starting kindergarten.  We are happy that we did not pursue more extensive evaluations for ADHD and other conditions before starting with the obvious.  Though I do not downplay that those conditions exist and require treatment, the explanation just did not seem to fit.  The explanation that his behavior was just a discipline problem did not fit, either.  Something was different.  No matter what struggles or medical conditions a child faces, I think all parents can agree that they want it diagnosed accurately and treated appropriately.  I would never want my child medicated when he really needs glasses. 

My hope is that more thorough eye screening becomes the norm.  I hope the professionals who are diagnosing learning disabilities are working cohesively with eye care specialists to ensure accurate diagnoses for all children.  Like us, our son’s teacher knew something was wrong.  She said she has never heard of this, but the explanation makes sense.  More awareness is needed.  From a parent’s perspective, here are some things that might tell you the issue is possibly vision-related:

  1.  After misbehaving, your child is able to sit quietly for a time-out just like any other child. When you attempt to explain why the child was put in time-out, he becomes fidgety, silly, excited, and absolutely will not maintain eye contact.  In general, bad behavior escalates or your child seems disrespectful when eye contact is required.
  2. You or others are saying things to your child like, “You just need to focus”, “watch what you are doing”, or “can’t you see that?”  You may already have it figured out – he can’t focus (literally), can’t watch, and can’t see.
  3. Your child rubs his eyes or holds his head as if he has a headache when playing with Legos or trying to write.  Allergies are not an explanation, because allergies don’t just come on when working up close.
  4. Your child will sit still while you read several stories to him and will retain what is read.  However, if you ask him to look at words in the book, he holds his head, refuses, and no longer wants to sit for story time.
  5. Your child is a bit clumsy, spilling food when he eats, getting paint or glue everywhere when doing art.
  6. Your child is confused in team sports.  People tell you, “it’s just new to him” or “he is still young”.  You see other kids who are new to it or young doing silly things on the field, but your child is actually trying with all effort to play yet looks confused or lost.
  7. Your child does not lack effort, but the product or performance does not show the true effort.  If it goes on long enough your child will eventually get frustrated and may stop putting forth the effort, but it doesn’t start that way.
  8. Your child covers one eye at times.  With our son, we thought it was cute that rather than suck his thumb he chose to place his hand over his face as a means to self-soothe.  This started very early and went on until he was about 4 ½ years old.  Now we believe he was blocking one eye to stop double vision.

I am not suggesting that strabismus is now the answer for every one of my shortcomings or every goofy, careless mistake I have made.  I am suggesting though, it has caused much more than just the nuisance of seeing my nose when reading.  My son’s eye problem is not responsible for everything he does or every difficulty he faces.  While it might not explain everything, I think it explains certain patterns.  It is seeing the patterns that allowed me to connect the dots and suspect he had an eye turn.  It is important not to dismiss the patterns as personality or things that just happen to everyone.  At the same time, overreacting to the patterns and looking for the most serious conditions is not a good starting place.

My son and I are just beginning our exciting journey into vision therapy.  We are blessed to have this understanding now.  As for my own minor struggles, I am grateful for them.  Because my son’s condition is harder to detect than mine, I might have accepted the answer that he does not have strabismus and therefore does not have a vision problem.  Without recognizing the similarities in our behavior, I would not have “known” that it was his vision and might not have pursued a second opinion.

Robyn Martin

7 thoughts on “Robyn’s Rules for Visual Disorder – 8 Guiding Principles for Parents

  1. Robyn,

    Great job! I loved reading this and am posting it on my book’s Facebook page. If you have Facebook, please be a friend of “Jillian’s Story.” I’d love for you to read about my daughter! You will find so many similarities to your childhood when you read about her. My website is http://www.jilliansstory.com. Thanks for sharing your story!

    • Robin,

      Thanks for your comment. I need to catch up with the rest of the world and get on Facebook. I am very eager to read Jillian’s story and compare notes. We are both so fortunate that our kids have been given the help they need. Like you, I have thought the college savings doesn’t really matter if we are not helping our kids meet their potential in school today.

      I am to start vision therapy soon and cannot wait. For me, one of my main difficulties growing up was that I was pretty sure there was an athlete inside but something was holding me back. I am eager to get that worked out – some coordination and awareness of space and my place in it. I am fortunate in that I did not struggle much academically. Though I do remember getting my firt “D” in high school trigonometry. It was all I could do to understand the “X” and “Y”. When they introduced the “Z” axis, I remember saying I don’t get this and can’t picture this in my head!

      Though I think things have worked out for me in general all my life, I do think some choices I have made may not have been my choices had I been achieving more at my potential. My hope is that my boys will be able to choose sports, hobbies, careers, etc. based on what they want rather than by eliminating all the things they cannot do. It would be wonderful for all kids to have thorough eye exams and proper help for any visual deficits.

  2. Dear Dr. robyn

    My son age 15 has recently started Vision therapy at home, using the HTS program on the computer. He has made good progress with Vergence, but still finds that in the Accomodative Rock exercises, he has great difficulty with the blue lens. The red lens is great! Despite several sessions, this is not showingmuch improvement, or may be better one day and then not great the mext. Can you help me understand this. Unfortunately I am not getting any real answers from his therapist. thanks

  3. Dear Robyn, I don’t know how I missed your post here until now. I am blown away by how well it captures my daughter’s experiences and subtle but, to me, unmistakable differences. She loves doing artwork and spends just as much time as other kids, yet it does look sloppy and careless. She loves to swim, but sometimes seems to have ABSOLUTELY no idea what is going on at swim class. She can actually swim on her own now, but in order to get her to do the motions they are teaching, they often have to move her limbs–she just has a terrible time paying attention in the pool and sometimes elsewhere. When I try to get close eye contact, she squirms. But she is so sweet, and is not disruptive, and I know she is trying and wants to participate! This just crystallized so much for me and I am deeply grateful to you for sharing! I feel now more than ever that we are on the right path in supporting her with vision therapy and soon, an OT evaluation. Thank you so very much! I am going to print this out and give it to instructors and teachers as needed.

    Best,
    Amber
    lifeandtimesofstella.com

    • Hi Amber,

      I am so glad you found it helpful! It is great that your daughter can swim on her own! How I hated not being able to do what others did! Yes, my son and I both learned those skills best when someone else showed us how to move our limbs. I finally learned to swim as an adult (before VT). I got to the point of trying to learn to make an “S” movement with my arms when pulling through the water. Standing in the water and watching the instructor demonstrate made no sense to me. I just didn’t understand how to move my arm – and how I would translate what she was showing me to when I was flat on my belly in the water. She had to move my arm for me, and then it made sense.

      I also had trouble learning flip turns. Of course, it wasn’t necessary to learn but I wanted to know what everyone else knew! I simply could not learn to flip and blow water out of my nose at the same time! I had to use a nose pincher until the flip became automatic enough for me to combine the two things. For my son, it helps to take him to the pool between lessons and let him float around wearing a PFD. He enjoys practicing side breathing and right/left arms without having to remember to keep his legs up. The PFD is like the nose pincher – it lets you work on one thing at time. These kids are capable of learning, but they sometimes need the steps broken down more than others. During my own lessons I remember thinking things like, “How am I going to remember to get my elbow up high AND keep my ear in the water at the same time when getting a breath?” Well, it works out eventually, but I was in those lessons for at least two years!

      Best luck to you and your family!

  4. Robyn,

    How to begin. Let’s start with, we always loved that “quirky” personality. Your article is beautifully written. I have been meaning to contact you for quite a while now to let you know we have been involved in vision therapy with Dr. Fortenbacher since June. Adrian will hopefully graduate in a few weeks. Her diagnosis amblyopia/strabismus. Ian has also started in his journey, refractive amblyopia. He started with glasses in November and is doing well. He just completed visual processing eval and was found to have at least a two year delay. He will begin therapy when Adrian is finished. He will not start Kindergarten in the fall. He is struggling academically in pre-k and continues to have significant delays in motor planning/ coordination. So hopeful we will see the same positive effects Adrian has experienced.

    So your special education college roommate has learned a lot over the years. I truly believe that many of my “learning disabled” children have an undiagnosed vision related problem. Now, what to do about that?

    Jennifer

    • Jennifer, I can’t believe it’s you! I am thrilled that Adrian and Ian are going the VT route. What a difference it would have made for me as a child. I only happened to catch your comments, because of today’s post regarding strabismus as a head to toe problem. The improvement in my posture is incredible. Even though I swore I would never go back to an aerobics class after that pitiful attempt with you in college, I may be up for it now. Maybe on my next trip home! Also – I think I am a little less quirky since VT.

      Best wishes for Adrian and Ian. They are blessed to have you and Kevin looking out for them!

      Robyn

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