So, here we are...

When I first started writing this blog, I had a very clear intention about the direction of my writing goals in reference to O's diagnosis. I was always so frustrated about the lack of education surrounding her diagnosis of a visual perceptual delay. Whenever I mentioned it to people, I would get confused blank stares. I wanted to educate people so they could understand how differently my daughter perceives the world. My plan was simple and set up as a science experiment. The experiment involved comparing the science of vision therapy and its related activities to her so-called "learning disability." I intended to prove to myself (not to others) that vision therapy is a ground breaking therapy that could shape a person to become an adaptive learner. For thirty two weeks, I wrote in great detail explaining the exercises and how to perform them. I described both her successes and her failures at school in the most minute detail. I failed at finishing my own personal experiment. I didn't give up but I became distracted.

Coronavirus. Everything changed with coronavirus. Once coronavirus engulfed everyone's attention and people were encouraged to stay home. The day the world shut down in mid- March, I became a second grade teacher, a preschool teacher, and a vision trainer. This is in addition to being a mother and a nurse who had to adapt her roles in every aspect of her personal and professional life.

For children like O who has a "special need," services such as speech therapy and occupational therapy have been non-existent. In an earlier post, I mentioned that other services such as speech, physical, and occupational therapies can be used concommitantly with vision therapy. For kids like O, they are imperative. The coronavirus shutdown has impacted O in such a way that she isn't getting the full benefit of her vision therapy. During the shutdown, these essential services have been deeemed as "non-essential." Her speech therapist blantantly told me "since I'm a contractor, I'm not doing that," and sent me worksheets to work on at home. Although so many people reached out with online resources, it was very overwhelming. I can't be a speech therapist AND an occupational therapist.

Before the shutdown, we had an IEP meeting in which we were making plans to try to prepare O for the third grade. I had a great deal of hesitation about this considering she still had a long way to go despite 32 weeks of vision therapy. Unfortunately some children require more services after vision training is complete. Some children are so far behind their peers, they need more services to catch up. We were hoping the additional three months in the second grade would give her more time to grow and develop those skills, but the world had other plans.

Virtual distance learning does not take the place of in-school instruction with kids who have trouble with vision and perception. The meanings of the words on the screen becomes lost because she spends so much effort trying to decode the word. That leads to frustration and inevitably it leads to giving up. She did a google classroom meeting with her classmates and she shrunk low in the chair, refusing to participate. I asked her why she behaved the way she did and she replied, "I'm afraid of being wrong and people think I'm stupid." Out of a seven year old babe. I.can't.even.

Long story short, we are going to repeat the second grade next fall. I am not looking at this as a failure, but as a chance to recover from a very tough year. A year filled with frustration, disappointment, and uncertainty. I say that, but it hasn't been all bad. She has learned to read street signs in a moving vehicle, learned to ride a bike on two wheels, and has improved her eye-hand coordination.

That being said, this blog is going to have a new purpose. I am no longer conducting an "experiment" to see if it works, because vision therapy does work. It works at the pace of the child and no two children are alike. Parents can not go into this expecting a quick fix, it is something that shapes over time. Every child is going to succeed at this at their own pace, some are going to take longer than others and require more effort than others. I do however, plan to write about the impact of vision therapy on MY child as she conludes her therapy and long afterwards. I am going to celebrate every success no matter how small and hopefully learn from our not-so-successes.

Patience. Love.

Second grade, ready or not, here we come!

7

First Day of School!!!

We didn’t plan this very well so here we are, the first day of school and week 7 of therapy in the clinic. Andy took the day off with me for our annual first day of school brunch. We skipped the normal plans in lieu of us having a day date. WE had to cut it short to make it to our 3:30 appointment. O was so excited to have both of us pick her up from daycare to go to her appointment. She exclaimed with pure bliss of excitement, “it’s the best day ever!!” In honor of Andy being present for the appointment, he was invited to join in the session to get his first hand experience with the clinic therapy. The girls didn’t disappoint!

But that left me completely in the dark with the home therapy….

We have a new exercise this week. This week they worked on accommodation. Accommodation is simply the mechanism in which the eye changes and adapts from near focusing to distance focusing. The mechanism of this is simple. The ciliary muscle (smooth muscle) in the eye is responsible for contracting just enough so the lens of the eye is able to focus light on the retina by changing its shape. This reflex is automatic and usually doesn't require too much active thought.

It took me a couple of days to figure out exactly what they were supposed to do especially since my work schedule keeps me away most evenings. I finally learned all three of the exercises the night before our next therapy session. Even some of the details are a little sketchy. I have also started a new routine in which I would play or simply snuggle with M while Andy is the therapy helper. I would play simple games such as “Spot it” or “Don’t spill the beans” because they can easily be played in the short amount of time before our bath time and bedtime rituals.

While playing with M, I would glance over to see Andy and O sitting at the dining room table facing each other in the chair. O has become to intensely dislike her patch so she would take her fingers and cover her eye instead. She was given a small patch that easily slides over her glasses but she hates that one too. The first game to test accommodation includes a big letter chart and little letter card. These are both laminated so they can withstand a careless seven-year old. First she would read the big letter chart with letters and numbers all the same size in a randomized sequence. She would be instructed to read a particular line while Andy holds the sheet while covering one eye. After that is completed, O is to read (with that same eye covered) another randomized row of letters and numbers from the little card that she holds. She is to repeat this exercise on the other eye.

The other exercise to practice accommodation includes a piece of paper with different shapes and symbols that are shaded a different color to help differentiate the different patterns. The purpose is to count the number of each shape or symbol without using her fingers.

The other two exercises we are to practice this week at home include our favorite “stick and straw” and “rhythm timing and sequence.” Andy has developed a more fun way to practice this one at home since we really want O to be an active participant without all of the moaning and groaning. At the beginning of the week I saw Andy trying to coach O to walk with her legs swaying out to the side alternatively. O was not buying it. I suggested Andy should coach her to use the tiles on the floor to use as a guide, but does he listen? No. Not. Ever.

Before I go on about how men don’t listen, he actually devised a way to get our seven-year old to cooperate, and surprisingly have fun while doing it. After all of the other exercises have been completed, O is instructed to go make her obstacle course. This results in several whoops of joy and then the stampede towards the playroom commences. She runs upstairs and takes several random toys, such as blocks, soccer cones, dolls, etc. and sets them in a pattern near her child-sized trampoline. Once on the trampoline, Andy claps out a beat and while she jumps to the beat, she calls out numbers. Andy has already predetermined the number prior to beginning. After she jumps the prerequisite number she jumps to the floor and jumps over the obstacles with alternating legs. M thinks this is a game so he joins in the fun.

One night at dinner, O made a comment to me that I had a hard time rationalizing. She told me at school she has to stay at her desk when the rest of her classmates get to sit on the carpet for certain activities. This made me wonder a few things. Is she being singled out from the rest of the kids? Is it because the school is actually taking Dr. R’s suggestions seriously and implementing them? Sometimes it’s hard to get information from her. When I asked her why, I asked her if it’s because it helps her see better and she nodded. I wasn’t able to attend the school orientation so I don’t quite understand the layout of the room. My husband tried to describe the new contemporary "pod" classroom where there are four classrooms seperated by a partition but open to each other. In the middle there is a common area for the kids to store their belongings. Instead of minimizing visual stimuli, there is a now an enormous amount. Not confusing at all.

New discoveries, tiny victories

THE CLINIC EXPERIENCE

This week Amanda decided to try to have O back in the classroom without me. I was a little surprised because I have become used to being a part of the therapy session, regardless if I am a distraction or not. At some point O is going to have to learn how to be independent so I walked her to the classroom and gave her a hug before I left. I went to the waiting room and popped my ear buds into my ear to listen to the audiobook borrowed from the library.

When they were done, I went back to the therapy room and there were all kinds of therapy equipment strewn all over the room. It looks like they had a really good time. Before we left, Amanda reviewed this week’s homework exercise. We have finally graduated from steeple (insert sigh of relief). I was so excited to finally hear Amanda utter those words. However, the new game has elements of steeple (insert groan here) but it has an interesting element to “spice” up our home activities.

STICK AND STRAW

The purpose of this exercise is to help with eye hand coordination. The materials used in this exercise include a pointer (the stick), a straw, and the eye patch. This is to be done without glasses. This activity utilizes three different axis’ in which the straw is angles. The straw is held by the helper in the “x” axis, “y” axis, and “Z” axis. The “x” axis is the axis in which the straw is held in the horizontal or longitude direction. The straw is in the “y” axis when it is held vertically or latitude position. The “z” axis is when the straw is pointing directly towards the student. Before each axis is performed, the steeple game should be incorporated to practice tracking. The first step is to cover one eye with the patch and repeat each axis 10 times. Then the action is to be repeated 10 times with the other eye.

It is important to remember when we this exercise O is to move the stick in a half rainbow motion. When the stick is in the “x” axis, her hand should move in a half rainbow to the side. When the stick is in the “y” axis, her hand moves the stick in a half rainbow over the top. When the stick is in the “z” axis, her hand should move in a motion that is similar to throwing a dart.

All three of the axis’ should be done for both eyes in one sitting. As the helper, we score the number of successful attempts completed. If O overshoots or undershoots, or comes in too high, she should be guided to redirect the stick on the next attempt. Her helper is encouraged to tell her what went wrong with each attempt. Her helper is to hold the straw in the appropriate axis that is prescribed. Then O is to repeat the technique in each gaze at different distances from the her eye. Each attempt is subsequently recorded as successful or unsuccessful.

In addition to this exercise we were told to continue with the rhythm timing sequence exercise and standing angels. My favorite part of these exercises is that these can be done relatively anywhere. They can be done at the grocery store, bus stop, etc.… We do get some raised eyebrows when we play them in public but it makes the experience more efficient rather than cramming everything into our home routines.

The other important factor involves identifying O’s favorite activities. It is easier to perform these activities in public if she enjoys them. Fortunately standing angels is one of her favorite games. However, the rhythm timing sequence game is not. This is surprising because I would have thought that jumping is any child’s favorite activity. I don’t know if this game is difficult for O because it requires too much that she can mentally handle. Without consulting Amanda we modified it to make the experience more enjoyable for all parties involved. I wouldn’t recommend this practice to everyone, but my child will shut down and stop interacting. Sometimes you do what you have to do to get by.

We modified this game by having her clap her hands together and spell her name the second her hands make contact. We will even incorporate other concepts such as simple arithmetic to make it more difficult. She seems to be more receptive performing the exercise in this manner so it’s like I said before. Sometimes you do what you have to do to get by.

Progress is slow. I am trying not to get frustrated but it’s that instant gratification thing. I feel as though God is trying to teach me a lesson on patience.

Speaking of which, I met with a friend who just happens to be the children’s minister at our local church. It was very encouraging because she is going through a different but very similar experience with her child. When I say that I infer her child has a different disorder that requires the same type of therapy. It was very encouraging to hear her story and hear how her progress is going. It’s very important for me to realize that she is several weeks ahead in therapy than O so her progress is significantly more recognizable than what we currently see. I need to stop comparing O to other children because they all have different problems and they are all very different people. Each child is going to develop and progress at a different rate. The affirmation is going to come with small successes.

Most parents I have interacted with at the clinics have all told me by week 6 they have noticed significant changes in their child’s progress, especially with reading. Although we have not seen considerable strides, O has made some small successes that need to be celebrated. We were on our way to a family gathering at our chosen family’s house for Labor Day when O announced a speed limit sign. She has never tried to read a road sign in a moving vehicle going 45mph before. We have never told her the significance of this sign either. Even though it was a small victory, it was victory nevertheless. My heart soared with pride.

Next week school starts and I have a lot of ambivalence about it. I have concerns about whether or not her teachers will accept Dr. R’s recommendations. I worry that they will take a look at this "new medicine" and silently roll their eyes about the validity about it. I don’t care if they think if I am a “crazy mom,” I just want my child to succeed and learn alongside her peers without fear of being singled out as "slow" or "dimwitted." My goal is for school to be easier for her. I wish I could predict the future.

I emailed O’s special education teacher right before the school orientation. I wanted to have a quick meeting so we could get our “best foot forward” towards the new school year. Unfortunately I had to work the day of second grade orientation so I had to rely on Andy to handle it. I remember asking Andy in great detail about how it went. All I got in return was a shrug as he said, “I handed them the paper with the print out results and they just took it all in…” Wonderful… I think I need to be a bit more proactive. Men….

I know I can’t complain too much since he has virtually taken over the practice time at home, but still….