So much has happened since I last posted. My mind is in a whir with new thoughts, questions, and possibilities. Mostly hope.

Before I go into the latest and greatest of our continuing saga, I have to share some new updates. First, O's developmental optometrist decided not to prescribe her kidfocals (bifocals for kids). She consulted another optometrist who thought the prescription might be too much for her to visually process. This relieves some of the concerns I had about her adapting to her body image and her perception of being "different" than her peers. Don't get me wrong, if it would help her, I'll support whatever is necessary. I want O to do more than "get by" in life. I want her to be the master of her own destiny and not let anything hold her back.

Secondly, to our disappointment we were not able to get her new prescription in those sought after My Little Pony glasses. Turns out that her prescription is thick (not Coke bottle thick) and won't sit in the frames properly. Even with the most advanced technology in lens cutting, they run the risk of popping out of wire frames due to their "false bottom"property. As a result, we had to find a set of frames (or two sets rather, because a backup pair is imperative) that she would equally be satisfied with. We let her try on a couple of different pairs and make her own decisions, to allow for more control. She ahs to wear them, not me. Because she is a princess, we were successful in finding a pair that were more stylish (they had shooting stars on the arms) and easier to color coordinate with her outfits. These two things may seem insignificant but it's HUGE in how she will continue to develop.

I have to admit my last post sounded like I was a tad bit defeated (insert sarcasm), but I am honestly just tired and frustrated. Although the light at the end of the tunnel for vision therapy is near, it has been a long and tiresome journey for everyone involved. Her vision trainer, J picked up on this sentiment and performed a little experiment. This experiment had two purposes. The first purpose was to track O's handwriting progress and secondly, to show me we have far more to celebrate than I acknowledge. My personality flaw is such that I am consistently and rather hopelessly a closet optimist. This means I portray the glass is half empty but I want to hope that it is half full.

At the beginning of vision therapy, O was tasked to write down some of her favorite things so they could get to know her. She had O perform the same writing task to assess her handwriting skills. Although it was a laborious process and she continues to utilize poor coping skills, we were able to recognize the fruits of our labor in a tangible, qualitative way. The difference was astounding! Everyone involved in her care has truly made a difference and for that I am thankful.

The biggest piece of news to share is the Occupational Therapy Evaluation. After months of unsuccessfully convincing the public school system that we need help, I did it. I put my big girl panties on and advocated for her elsewhere. I am exhausted from the fighting and not being listened to. I am tired of being labeled as "that mom" who carries big folders of documents pertaining to her disability to every new consult. I am irritated with constantly being told that it's a behavior issue and she will eventually grow out of it as she matures. I am sick of people who know nothing about her who like to put their "professional opinion" as such she must have an attention disorder, autism, anxiety disorder, etc. just because they have never heard of a visual perceptual delay. One teacher actually suggested I consult a pediatric neurologist because a VPD is something that I must have invented to get attention (by the way, that didn't go well and she found herself in the principal's office real quick). Listen to me. Stop talking and listen to me.

Now that my ranting is over and I have that off my chest. We had our first pediatric occupational therapy eval this morning. I answered questions and questions about the most random things and behaviors. How she puts individual pieces of clothing on, how she brushes her teeth and hair, how she responds to sounds and textures of foods, etc. Our new "friend" L, did not leave any stone unturned. It was very thorough and it led to me filling out a "sensory profile." This profile asked all kinds of questions that leads me to believe we may have discovered more than I bargained for, and its not just the visual perceptual delay. We were unable to complete the entire evaluation in one session because O was in her truest of forms. Uncooperative, manipulating, anxious, and evasive. At one point during the eval, she was simultaneously hopping like a rabbit and barking like a dog instead of doing what was asked of her. I was able to confirm this is her normal behavior on a daily basis.

Our new friend L. informed me that she was happy we have already been through the process of vision therapy before initiating Occupational Therapy. Her rationale is simple. It's significantly easier to work on developing fine and motor skills after correcting the vision. She has worked with so many children who are involved in concurrent therapies of vision and occupation therapy. During her practice, she has discovered it is more strenuous on the child to develop vision and fine/gross motor skills at the same time. It does put added stress on the families with 52 weeks of vision therapy, then 30 weeks of occupational therapy.

During the eval, O aced the visual perception portion of the testing, which was no surprise. At her last few vision training sessions she has undergone testing to evaluate her progression. Before vision therapy her visual skills were those of a five year old with an acuity of 20/50 in her right eye (her amblyopic or lazy eye). She currently has the visual perceptual skills of a 13 year old wth a visual acuity of 20/25 in her right eye! That in itself is an amazing achievement. We have to return next week for the final portion of the eval, but L validated everything I already knew. O needs help and there is so much they can do to help her. They just need to get all of the pieces of the puzzle together to come up with a game plan.

I have so many questions.

Vindicated. Validated. It's all I wanted.

Peace. Love.

It's been an extremely long and difficult week so before I continue, I promise I am not engaging in any type of pity party, I'm confused and unsure of what to do next.

I have mentioned quite frequently the struggles that we have with reading and comprehension. I have left out one of the most common symptoms of a visual perceptual delay and that is bad handwriting. To the untrained eye, messy handwriting is considered simply as a reflection of a person's character- sloppy, careless, impatient, or asbsentminded. To the trained eye (in conjunction with other symptoms) this could mean a much bigger problem.

O has always had sloppy handwriting and she has always had trouble putting her thoughts on paper. It's not that she is lazy or careless, she has difficulties with the mechanics. Her letters are uneven, there is little to no spacing, and she has trouble with writing particular lowercase and uppercase letters. She also has a tendency to reverse letters such as b, d, p, q, m, n, and w.

When I describe her perceptual delay to other people, the first question I am asked is, is she dyslexic? When we started this journey I wondered the same thing but it's so much more than that. The symptoms of dyslexia are parallel to the symptoms of a visual perceptual delay. O's visual perceptual delay has multiple elements to it and the symptoms often become apparent in school age children when the focus is on developing reading and writing skills. In children with a visual perceptual delay, dyslexia is a SYMPTOM, not a diagnosis. These include, but are not limited to...

  • problems learning the names and sounds of letters and combining them together known as phonics

  • unpredictable and inconsistent spelling

  • putting letters and figures the wrong way round (such as writing "6" instead of "9", or "b" instead of "d"). This phenomenon is known as reversals.

  • confusing the order of letters in words and changing them to create new meanings

  • reading slowly or making errors when reading aloud

  • The child may describe letters and words as moving around on the page. Some children need words to be isolated or covered when reading to prevent these visual disturbances

  • has difficulty writing things down but can answer questions well orally

  • difficulty following the sequence in a story such as first, next, then, last, etc..

  • difficulty following directions such as left, right, top, bottom, etc..

  • struggles to learn sequences in movement

  • slow writing speed

  • poor and sloppy handwriting

  • problems copying written language (from a blackboard onto paper)

  • takes longer than usual to complete written work

  • poor phonological awareness and word attack skills such as decoding

This is my world. Everyday. O consistently refuses to write anything. AT ALL. We have tried multiple tactics such as utilizing a slant board, handwriting practice paper with the big lines, writing letters to her distant relatives, creating stories with her cousins, you name it, we have tried it. We thought this would help her overcome this, but she continues to use poor coping mechanisms, such as extreme anxiety, avoidance, dependence on others to complete tasks, and manipuation. She will say something is boring if she can't do it, and will shut down and refuse to engage.

So why is this week out of a sudden has it become so difficult that I found myself bawling in front of her pediatrician and her vision therapists? Because I finally realized I need to stop being in denial and take matters into my own hands. I took O to her well visit with her pediatrician (whom I absolutely LOVE and would recommend him to anyone). He firsthand witnessed her anxiety regarding reading, writing, and basically everything else. Immediately I tried to defend myself by telling him I have battled with the school system to get an OT evaluation. Both of her teachers knew the struggles she with in school but it was basic red tape that prevented us from receiving the help we so desperately need. I was told before we put in a new request for any kind of evaluation, the previous IEP plan had to expire. I honestly don't believe this as a truth but whatever, there isn't anything I can do about it now. My heart to heart with her pediatrician has made me realize when it comes to my daughter I can't wait for others to make a path for us.

Coronavirus continues to be a huge factor in determining what we are going to do next. I have heard rumors that my school system doesn't have a plan for returning in the fall. When they finally do return to in person education, we don't know what school is going to look like. Are they going to have reduced hours or a reduced number of days during the week? Are they going to limit the amount of school children allowed in one space at a time? Are they going to provide extra services for these kids who are falling behind in rudimentary skills? It's anxiety provoking and I don't have room for that in my life.

Our conversation has led me to start thinking about private occupational therapy. Her pediatrician knows of a therapist in a neighboring city who has worked magic with some of his patients with a special need. As I mentioned in other posts, it's one more thing. One more thing that makes her work harder and provides more stress. One more thing to make me work harder and adds more stress. When can she just start being a kid and have some fun? When can we have time together and do things that isn't "one more thing"?

In addition to this, O is very self aware of what is happening with her situation. Although she was at first content with our decision to repeat the second grade, she has realized the implications of this decision. She has two best friends she has literally known since birth that attends her daycare. They have passed all of the requirements for second grade at a different school and are advancing to third grade in the fall. She recognizes they are moving on without her and she is afraid they will no longer be her friend and make fun of her because she is "stupid" (yes, she said that). My heart is breaking for her because her confidence is shattered into tiny pieces despite all of our many accomplishments this year. This is what she recognizes.

We received the letter from the principal this week acknowledging that all of the parties including myself, my husband and her teachers have agreed she should repeat the second grade since she hasn't "met the academic and developmental milestones." Even though this is what I wanted and I am relieved to have something in writing to finalize it, I am sad and defeated. I know this is the right thing to do and it would be good for her but it seems so final and absolute. Real.

Next year I want her to walk into her classroom and be on an even playing field with her peers and be confident with who she is and her abilities. I know that if she is going to be confident, I have to show her confidence. Her pediatrician told me I need to lean in on the people who are able to help and support us. I need that support and validation to be confident we can overcome this.

"I get knocked down, but I get up again." Tubthumping.


You might be thinking to yourself, what in the world do these three things have in common? In a normal setting, these three things have absolutely nothing to do with each other. They seem to be random utterances to most people, but I have found everything in my life is unplanned and unmistakenly random.

It has been an interesting couple of weeks in our quest to achieve literacy. Our tale begins with an average ordinary visual checkup to update Os prescription in hopes this will help with her performance in reading and writing. We decided to change offices specifically for O so she can be followed more closely by her developmental optometrist to ensure there isn't a regression after we have reached our vision training goals. At the end of our appointment, the doctor mentioned something I never thought I would hear. Bifocals. For. A. Kid.

I was stunned. My personal experience with bifocals began when I was 21 years old. I remember telling my own mother what the eye doctor prescribed. I hesitated, "before I tell you please promise you won't laugh." She promised so I confided that the optometrist thought I needed bifocals. Her response? "That's not funny." I can still feel her shock and disbelief through the telephone. That is the EXACT same feeling I had at that moment. Sure, bifocals for a 21 year old is not unheard of. But for a seven year old?

I'm sure the doctor must have seen the tear slide down my cheek becuse she quickly reassured me. The thoughts that are running through my mind consist of worrying that O will fit in with kids her age and whether or not she would tolerate two lenses with a noticeable line. Those are the same things I worried about when I first started to wear them at 21. I can't even imagine at age 7.

Pure and simple. It's vanity. It is the very reason I refused to wear my glasses over the years. I was advised the lined bifocals were better for the brain to learn how to use the lenses correctly. In children, the polycarbonate version only come as lined lenses. Later in life she can choose the no line variety or even try contact lenses. Years ago I was told they could not manufacture contact lenses with a bifocal prescription but now technology has changed to accomodate those with accomodation insufficiencies.

Accomodation insufficiency is one of the multiple eye disorders O lives with on a daily basis. Accommodative insufficiency affects a child's ability to change their focus from near to far. This eye disorder can cause difficulties in physical activities, development, and school work. Similar to O's circumstance, these children can be misdiagnosed as learning disabled or other problems. Bifocals, or what I like to call Kidfocals, can help master simple tasks such as reading, writing, and copying from the board. Children are not prescribed bifocals to improve vision, but to keep their eyes working together (eye teaming) and develop properly.

This rationale makes it an easier pill to swallow. My husband and I are willing to try anything to improve O's reading ability. One of the hardest things for me to personally reconcile about her diagnosis, is that we keep looking for more. More solutions. We have tried almost everything (and spent a lot of money) to help O succeed at literacy. It has been a very long road with some pretty awesome accomplishments, but no earth shattering changes in her confidence which is the root of her success. She still thinks she can't do it. Everyday is a constant battle with manipulation, avoidance, and surrender.

Due to the pandemic and to my dismay, Walmart is not fitting new prescriptions, and that is a huge disappointment. With two growing children requiring glasses to include a backup pair, who wants to pay an arm and a leg for glasses? Bifocals, I mean, kidfocals are expensive and what child ever takes care of their things? Both of O's current frames are held together by duct tape and glue with multipe scratches all over the lenses. It's time to bite the bullet and its imperative to sell the concept to the girl child. While she was in her training session, I picked out a few frames for her to try on. I had been eyeballing these pretty "My Little Pony" frames whenever I would wait for O to finish her training sessions. I expected them to be "over the top" expensive but was pleasantly surprised to find they were relatively affordable with insurance.

I presented the frames to O when she finished eye training. She squealed with delight when she saw the little "cutie mark" on the arms of the frame. If you ever wondered what the little picture on the MLPs backside is, it's called a cutie mark, the mark of friendship. She instantly recognized the apple cutie mark as "Apple Jack" and the balloon cutie mark as " Pinkie Pie." She was ecstatic as she exclaimed,"I get to be a different pony everyday!" The lady who helped me with ordering the frames was very helpful in explaining to O about the "kidfocal." She revealed the kidfocal was going to look like a little smiley face on her glasses and drew her a picture on the lens so O could visualize it. O was absolutely mesmerized. SOLD.

So, where do the giraffes come in? Well.... a colleague of mine referred me to a reading tutor who has done wonders for her child. She currently works as an elementary school teacher who tutors in reading for extra cash. She came highly recommended so it's worth a shot to prevent the "summer slide," especially since we have been out of school for three months already. We recently had our first session so she could assess O's ability to sound out words phonetically and spelling. She still has an extremely difficult time with these simple tasks and resorts to her usual manipulating and avoidance behaviors.

Our first book was a read aloud book from youtube, "Giraffes Can't Dance" by Giles Andreae. The premise of this children's story is about a giraffe named Gerald who is very tall and very clumsy. During the annual jungle dance all of the other animals danced various dances ranging from the waltz, tango, cha cha, etc... However, Gerald was very bad at dancing because he was so clumsy, so the other animals laughed in his face and made fun of him. He felt useless and foolish and ran away into the moonlight. A cricket came upon him and told him that sometimes "when you're different, you just need a different song."

The cricket played Gerald a violinist tune and Gerald began to dance gracefully in time with the song he heard playing from the moon, leaves, and breeze. The other animals witnessed this sight in amazement and begged to learn his secret. Gerald simply replied, we can all find music when we find music that we love."

Moral of this story as adapted from our new friend and reading tutor: "We can all read when we find out what we love to read about." Now is the time to go and get it.

Patience. Love.

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