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.