We visited Dr. Mojallal last week to try the NuEyes Visual Prosthetics/video glasses. I had a deal with Cole that he was going to put the contacts in and we prepared all week. Unfortunately when it came down to it he just couldn't. He says he's afraid his eye ball is going to get poked into his brain and get stuck there. We took a step back and let him take a "contact class" with the optometrist which entailed trying to teach him how to hold his eye lid and practice touching his eyeball. Unfortunately nothing worked. 
Although the NuEyes can be ordered with his prescription lenses, it is too hard to test and see if he would benefit from them over his existing glasses. So to get a good idea whether we should get these glasses we really need him to wear the contacts. The NuEyes are AMAZING! I expected it to feel uncomfortable having the image so close, but it wasn't awkward at all. You literally say, "glasses closer" and they automatically zoom closer to whatever you are viewing. Similarly you can say "glasses further."So Dr. Mojallal said to go home and keep working with him on the idea of putting in the contacts. He asked us to come back once he is able to touch his eye and when Cole says he's ready to wear them. At that point we will then reinvestigate the glasses. I did call our insurance company and I am able to get a policy for them. It's not cheap since these are considered medical equipment and have a higher rate, but still good to know that we wouldn't have to pay full replacement value! The doctor also said he has some ideas where we may be able to find grants to pay for them (they are over $6,000). So we will keep trying and hope that he will adjust to the idea sooner or later.
We also had an appointment for Cole with the developmental pediatrician last week. It went very well and he was very focused for the appointment. She asked him some tough questions and had him complete some tests to determine how he's doing developmentally. Overall she said he appears to be on track educationally although he does exhibit some delays when it comes to tasks that require more precise visual involvement and focused attention. Based on the feedback I provided on behavior challenges at school and what he exhibited during the appointment, she provided some recommendations.
The first is that we request the school complete a Functional Behavior Analysis (FBA) to provide the data needed to implement a Behavior Implementation Plan (BIP). I met with his classroom and resource teachers to talk through the options. He currently has a goal in his IEP to have 90% of his time being on-task (aka staying focused). They provided data from the on-task testing they have been doing which shows there has been an increase in the time he is on-task from 67% of the time to 76% since the implementation of the token/reward system. After a lengthy conversation we have decided to give this strategy a little more time to see if it continues to improve before we move to the FBA and BIP since they think the BIP is less motivating than a reward system. With the reward system, after he gets 9 tokens he is able to choose a reward (playing with action figures, play doh or bubbles). To gain tokens he needs to 1) raise his hand if he has a question, 2) complete his work, 3) keeps his hands to himself. While I am not against this system, I worry the time between rewards is too long for him to connect it with behavior and therefore it may not actually change it. But I also believe the whole team needs to be bought into whatever solution we choose if we want it to have an impact. The developmental pediatrician, Dr. Dharia from Capital Area Pediatrics, also suggested I reach out to the Department of the Blind and Visually Impaired and request a classroom observation to see if we can determine the antecedent to misbehavior. The theory being that if he is unable to see his work that he will lose focus which could lead to misbehavior (e.g., interrupting his neighbor). After speaking with our Loudoun County contact (who I've been working with for several years), she suggested I coordinate more closely with his teacher of the visually impaired first. If she wants additionally support from the state then she would love to come help. After speaking with his TVI, I am going to provide some additional documentation for her to review (e.g., class work) and get her perspective on whether any additional modifications need to be made for him to successfully complete his work (i.e., access his education). I'm feeling rather discouraged currently. Mostly because I am not always a patient person and when it comes to my child's education, I want to move at lightening speed (we're definitely not). The good news is that Cole is on track educationally so we have some luxury with time to figure out the learning part. But I worked diligently last year (or I thought I did) to be prepared for this year and I'm not sure we've truly figured everything out yet. I try to remind myself that every child's learning is a slow and steady journey and if I try to adjust my perspective perhaps it won't feel so time sensitive and I won't feel so frustrated. I find myself volleying from feeling like I am too involved and need to just let nature take its course to feeling like I need to find better ways for him to learn and for him be able to see the work he is expected to do. And it is with that thought that we are off to enjoy the holidays and not think about school or doctors for a week.
As promised, I have to share the latest funny comment from Cole:
At church Sunday we were praying after communion and Cole leans over and whispers, "Mommy, is it ok if I pray for bad people?" I said, "well of course, they need us the most!" He said, "Ok, then I'm going to pray for the devil. That is one bad dude."
No comments:
Post a Comment