My Son

I felt the need to share this to give insight and a sense of honor for those that are Achromats or have some other disability. You don’t have to live in the shadows no matter what your disability may be.  Be the change you want to see, and don’t allow anyone to label you.  Take away from this an understanding that you are a unique individual that is just as deserving as anyone else.  Don’t Put yourself in a Box!!!!

My son has always excelled in school. Despite dealing with being blind, color blind, and having astigmatism he found a way to put the spotlight on his abilities.

  • He received the Presidential Gold Seal Award for Academics
  • He has competed an won all reading, science, and writing competitions in school
  • He has since kindergarten maintained an A-B grade
  • Since the 3rd grade he has been reading on a 2nd year college level
  • He actively participates on the varsity wrestling team
  • He has received over achievement awards on all standardized testing
  • He has taken AP, Honors and College Bound Courses
  • He even took the ASVAB test and scored higher than anyone in his high school (he can’t go in the military but he wanted to know how well he would do on the test, subsequently every military branch officer has called our home and gone to his school to speak with him)
  • He has been learning to drive within his limits.
  • He strategically taught himself how to recognize certain shades of color.
  • He was accepted into the National Society of High School Scholars
  • Dartmouth College and Cornell University offices of admission sent him a letters wanting him to attend thier school with offers of assistance with admision
  • He’s already been accepted into Ogelthorpe

Having read through some of the timeline from the Achromatopsia  FB group this is what he wrote;

“I see many different stories with the same context of ill prepared parents and with that comes children that even as they grow older have to play it by ear so to speak. I think its hard on both ends for the parent and child. The parent wanting to always help and do what’s right may end up pushing us to different things that may not help or are totally irrelevant to an achromats disability if you will. Again here we are the achromats, no have eye nor ear of anyone else like us within our own area(or is that just me). We are at a cross roads now and I can sum it up from my perspective like this, “We are to independent to be blind, however to blind to be independent”. What do you do when the world looks at you and expects you to perform at there level, yet inside looking out you know you are not like them? But look it’s society so you don’t fight it, you try to live with it not asking for the help you need, not wanting to be seen or labeled as something different. Alas we are different we have limitations that do not correlate with our normal appearance’s expectations. We are achromats whether BCM, incomplete, complete, whatever your case its all the same, a life of learning and adapting with the prologue to your story being more question than answer. I am De’Shun Brown and I do not suffer from achromatopsia, it is merely my chronic roommate:I am a 17yr old senior,145lb varsity wrestler.graduating AP/Honors student, in a PUBLIC high school and I say to any achromat or parent of one; whatever it is we can do it with respect to our chronic roommate.  ‎”I do not see life in color for I see it in its many opportunities” -JimmyHCO  I wrote this quote after seventeen years of sulking and feeling alone I have realized Achromatopsia is what makes me a stronger more rounded person.”

Being Human is to be disabled and Being disabled is to be Human ~ JimmyHCO

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JIMMYHCO is my son’s alias on instagram

At this point in my son’s life he is facing the hardship of having pushed himself and gone beyond the limits of his visual abilities.  Headaches are coming frequently, he has eye fatigue more often, he is wearing his sun glasses even at home, he is now using his cane everyday,  he his utilizing his assisted aides at school, and he is requiring his teachers make all necessary alterations to his assignments.  It has been very difficult having to watch him go from being so independent to dependent. We think his limited sighted has been weakened by his over activeness.  Even with this shift I wouldn’t change anything about the way I raised him. I do believe this shift has given him the courage to accept himself  as he is and know that even with this disability he is just as deserving as anyone else.  He  now feels he doesn’t have to hide his disability from anyone by not using his aides in school. He no longer feels the need to fit in with normal sighted people. Using visual assisted aides carry with it a stigma that he never wanted to be associate with him. Now he understands it’s about his quality of life not the opinions of others.  He is an Achromat and  proud of it. A lesson hard learned but very well needed. I do feel that had I not pushed him we would have never known his full capabilities because schools try to put you in a box once you present with a disability and He has proven that your handicap doesn’t determine your outcome. His vision teachers and mobility teachers have all said, “he has taught them more than they have taught him.”  His goal for his life is to have a masters degree in psychology.

 

Tamara Brown

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