Tubthumping

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.


Patience.Love.

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