A Sit Down – with Robin Benoit

This post appears as part of a series called Sit Down – candid conversations with real people detailing their journeys and experiences with Vision Therapy.

A Sit Down – with Robin Benoit

Robin Benoit picture

For the benefit of our readers, can you explain how you are involved in Developmental Optometry?

I am a mother, writer and advocate for optometric vision therapy.  My daughter is Jillian and her story is featured in the book “Jillian’s Story: How Vision Therapy Changed My Daughter’s Life.” She is now 14, but went through vision therapy when she was 10.  

At what stage did you first realize Jillian was having difficulty?

My husband and I were shocked to discover Jillian had a vision problem.  She had been struggling in pre-school with a possible developmental delay, but the true answer was revealed during a special day at school.  When she was 5, her school had Letter “P” Day and she went to school in her pink and purple pajamas ready to paint, play and pretend.  When given the chance to pretend to be a pirate, her teacher slipped a patch over Jillian’s left eye and she fell to the floor crying and screaming for help.  The teacher called, explained what had happened and said that she didn’t think Jillian could see out of her right eye.  I thought that was highly unlikely.  She had been through four vision screenings, two at the preschool and two at her pediatrician’s office.  We had never taken her to see an optometrist because we thought those vision screenings were trustworthy.  Upon visiting her pediatrician that same afternoon, we discovered her teacher was correct – she could barely see out of her right eye and was terrified whenever a patch was put over her left eye.  I thought she must have developed a brain tumor or something equally horrible because I reasoned that she could not have an undiagnosed vision problem.  Several days later, she was diagnosed with amblyopia by an Ophthalmologist. 

When we were arranging this interview, you indicated that you had tried other solutions for Jillian prior to discovering Developmental Optometry. Can you elaborate?Jillian with eyepatch

Jillian was under the care of an Ophthalmologist from roughly age 6 to 9.  She was patched 11 hours a day for the entire three years.  When she turned 9 years old, her doctor said that she would progress no further with patching.  He suggested we try Atropine drops, which Jillian hated and we discontinued using them.  He never mentioned vision therapy. 

How did Vision Therapy come into your life, and were you sold on its effectiveness from day one?

Jillian has said on numerous occasions that we found vision therapy because the Ophthalmologist made her mom mad!  She is correct.  Jillian was struggling in 4th grade — academically, emotionally, and physically.  Her teacher said she was an engaging and very bright young lady who should not have been struggling as much as she was. She began to question the fact that Jillian could answer questions verbally and not do as well on a written exam.  Her PE teacher said she seemed afraid to be in her class.  One day her teacher called me at home and said she thought Jillian might have a kidney infection because she was going to the restroom constantly.  Jillian didn’t have a kidney infection.  She was trying to escape from class.  When I asked Jillian why she was in the restroom so often, she confided in me that math made her head hurt.  She was hiding in the restroom to avoid the class and the pain that came with it.  She also shared that if she needed to vomit, she was in the right place.  I reasoned that it had to be a lingering vision issue and took her back to see her Ophthalmologist.  He was so irritated that we were there after only a couple of months instead of the year that he had recommended.  He said he could make a slight change to her prescription, but I knew this was not a small problem.  He stood by the door of the examination room with his hand on the door knob while I quizzed him about contacts and vision therapy.  He was no help and so rude over my inquiry about vision therapy (which I had read about on the Internet), that I did get angry.  I left his office determined to learn more about vision therapy.  Thanks to the COVD and OEPF websites, I gathered up a stack of information and found Dr. James Horning.  I was sold on vision therapy.  My husband was a bit skeptical because our pediatrician discouraged us from pursuing it and it wasn’t covered by our insurance, but at that point we knew we would try anything that might help Jillian.  Best decision ever!

When Jillian first visited Dr. James Horning’s office in Jacksonville, Florida, what was her diagnosis and what plan of care did Dr. Horning recommend? 

Jillian with Dr. HorningDr. Horning diagnosed Jillian with amblyopia, but also included a few surprises.  Dr. Horning told me once that he will never forget how loudly I gasped in shock when Jillian told him she saw two mommies.  He informed me that she had real problems with double vision, depth perception, peripheral vision, teaming and tracking, directionality, spatial awareness, etc.  The list was long.  He recommended further testing with her vision therapist, Lindsey Hebert, and ultimately we embarked on an estimated 30 weeks of vision therapy, but Jillian needed 45 weeks to graduate.

What were Jillian’s experiences in Vision Therapy like?

Jillian met with Lindsey in the office once a week for one hour.  She also did homework 4 to 5 nights a week.

As Jillian progressed through her VT program, did you or her teachers notice academic improvements?

Her teachers were amazed!  The changes started coming about fairly quickly – within a couple of months.  I remember the first time Jillian got a 100% on a spelling test.  Her teacher put stickers and smiley faces all over it and Jillian came home after school, running into the house waving her paper in the air.  We put it on the refrigerator.  It wasn’t long before the refrigerator was crowded with her achievements.  Jillian’s self-esteem soared.  The Parent/Teacher conference in the spring of her 4th grade year was a testament to how much vision therapy was helping her.

Jillian in VT

The efficacy of Vision Therapy can, at times, be a hot button in some circles of the medical world.  Conceivably there were times when you experienced someone telling you Vision Therapy would not work, or perhaps was a waste of time.  Knowing what you know now, what advice would you offer other parents who may find themselves in similar situations?

Jillian and I receive numerous emails from parents and this is the #1 question.  It is hard to pursue something when people you respect, such as your pediatrician, are not supporting you.  We encourage parents and adults to see a qualified optometrist and get a comprehensive eye exam.  After all, optometrists are doctors too.  We refer parents to other books, websites and videos about vision therapy and suggest they look into it on their own.  I was in their shoes once, a parent who was uncertain and unclear about vision therapy.  That is why Jillian and I work hard to advocate for it.

Your passion surrounding your daughter’s success has inspired you to author two books, the first of which, entitled Jillian’s Story: Vision Therapy Changed My Daughter’s Life, was published in 2010.  Where did the idea to write a book originate?

Jillian's Story coverThe idea came from Dr. Horning as I pestered him with “why” questions – why is vision therapy not widely known, why did our Ophthalmologist and Pediatrician try to steer us away from it, why won’t our insurance plan cover it, why are doctors not referring people to vision therapy, etc.  He suggested I tell people about Jillian’s success.  I didn’t know how.  I thought about starting with a blog and began putting one together one evening.  The very next day, Jillian’s teacher told me that Jillian had diagnosed another girl in her 4th grade class with a vision problem.  The little girl was covering one eye when she read and that caught Jillian’s attention.  Her teacher luckily listened to her and sent a note home to the family.  Jillian’s classmate was 10 years old with undiagnosed amblyopia.  She also went on to successfully complete vision therapy.  Jillian’s teacher implored me to do something to raise awareness about vision therapy.  It was really Jillian that made the final push toward a book.  She said she wanted to help other kids like herself so that they might be happy too.  I started writing in earnest and the book just poured out of me.  It was really easy.  I didn’t know how to get a book published, but with the advice and help from a friend, I signed a contract with Brown Books Publishing Group and the rest is history.

What was the response to Jillian’s Story: Vision Therapy Changed My Daughter’s Life?

Unbelievable!  We had no idea.  I thought Jillian’s experience might help a few families, but the next thing I know, books are flying off the shelves and Jillian and I are getting emails, sometimes as many as 25 or more a week, from people sharing their own VT success or their frustration that they had never heard of it or tried it.  Jillian began getting emails from kids asking such adorable questions.  One young boy was scared to go to the eye doctor because he didn’t want to get shots in his eyeballs.  Another little girl wanted to know if her eyes would still be blue or if vision therapy would make them change color.  Some kids in vision therapy would write to Jillian with complaints about the home exercises and Jillian always encouraged them to keep going.  I know of a few optometrists who were surprised to find emails from Jillian suggesting they switch up the home exercises or offer a prize box to kids to keep them motivated.  I think the biggest surprise was seeing copies of Jillian’s Story purchased and shipped to countries like Japan, Malaysia, Singapore, Norway, Australia, etc.  It is so inspiring and touching for me to receive notes from mothers all over the world who said we gave them hope and a new direction in which to seek help for their child.  It doesn’t get any better than that.

There is much excitement surrounding your second book, Dear Jillian: Vision Therapy Changed My Life Too, which is due out soon and has a different flavor.  What can you tell us about it?

Dear Jillian book coverIt is actually available now!  The official book launch will be on October 9th in conjunction with a presentation Jillian and I are making at the COVD Annual Meeting in Orlando.  Our publisher suggested a “soft opening” for optometrists and vision therapists because many purchased our first book in bulk.  It is only available at this time on our website, www.jilliansstory.com.  Several people have asked if they can write a business check for books and we’ve worked out a plan.  For check orders, simple email me at robin@jilliansstory.com and I will take care of it.  Orders placed now will be filled prior to book launch.   The Optometric Extension Program Foundation will also have them available after October 9th.  We are so grateful to OEP Foundation for sending a pre-launch copy to all of their members.  As you say, Dear Jillian has a different flavor.  The book is not about Jillian at all, but rather about 22 amazing people who wrote to her or that she met through her advocacy efforts.  She is co-author, writing a large part of the book.  Each chapter in the book is about a person and how vision therapy played a part in their life.  There are more adults than children in this book and more males than females.  We look at how vision therapy changed the lives of those struggling with traumatic brain injury, anxiety, strokes, and polyneuritis as well as vision problems such as amblyopia, strabismus and convergence insufficiency. We are not only thankful to these wonderful people and their families, but to their optometrists and vision therapists who shared so much with us for the book.

Having traveled this road, what advice would you offer to parents when their child starts to struggle?

My advice is always to take their child to an optometrist who has experience with vision therapy.  I mean absolutely no disrespect when I say that not all optometrists are created equally.  I remember one mother asking me “What can the dude at Lens Crafters do to help my kid in school?”  That was fun to answer!  My advice is always to look outside the box and to give vision therapy a try.

I’m sure after reading your books, many parents of struggling children may have questions, as they seek a course of treatment for their own children.  What is the best way for them to contact you?

Email is the best way.  For me, they can use robin@jilliansstory.com or Jillian is jillian@jilliansstory.com

 Jillian and Robin book promo

Some closing thoughts – A great thanks to Robin for taking time out for this interview.  She has truly become an amazing advocate for Vision Therapy and I look forward to meeting both her and Jillian next month during COVD’s Annual Meeting.  Please join me in wishing Robin, Jillian, and all the children in Jillian’s shoes the absolute best!

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Posted on September 20, 2013, in Sit Downs. Bookmark the permalink. 4 Comments.

  1. Another excellent entry in your fantastic series of interviews, Robert. Keep them coming! Robin, thanks for your tireless efforts on behalf of children with visual difficulties everywhere, and for my signed copy of Dear Jillian. It is a wonderful book.

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  2. Jillian’s story on You Tube was one of the places I found myself, watching at 1:30 in the morning, as I was trying to decide whether to embark on this journey for my 8 year old daughter. Our Opthamologist had also been incredibly rude when I asked about Vision Therapy following TWO YEARS of glasses. My daughter still unable to read a simple sentence and they told me “VISION THERAPY WONT WORK!!” Big FAT LIARS!!

    I cannot thank you enough for everything you have done to get the word out there. I am on the same mission myself now. Alli’s eye Dr has emailed me saying how BUSY she is now that Alli’s story has been spreading……..Soon, there will be more of US than THEM and more children and adults can be helped!! I want Alli’s story to be in Book 3!!!

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  3. It is heartbreaking that so many parents are dissuaded from undertaking vision therapy because too many pediatricians and ophthalmologists apparently still bristle at the idea that a non-MD could possibly be more competent in this field. As much as I knew “Jillian’s Story”, it was good to re-read how Dr. Horning encouraged you to write the book – in essence giving voice to the frustration that many other families have experienced. Thanks for being a catalyst, and your books are filling a void that PAVE (Parents Active in Vision Education) left after Marjie Thompson’s passing. We wish you continued success!

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