Tuesday, October 7, 2014

Low Vision Diagnosis

My son's response upon receiving yet another label for himself was, "Maybe God isn't giving me all of this stuff in my life to challenge me.  Maybe it is to test all those who have to deal and work with me.  Just when you think you have it figured out, He throws something else in there."  

My son, S, is almost 18 years old.  He is a senior in high school.  He is homeschooled and has been since he started the 6th grade.  He has Cerebral Palsy (CP) which impacts his gross motor and fine motor skills along with his speech, Attention Deficit Disorder (ADD), Scoliosis, and he has recently been labeled with Low Vision.  

We have always known he has had vision issues related to his nystagmus.  When he attended public school, the schools always made accommodations for him related to his CP that also helped with his vision issues.  He was seated near the front of the classroom.  He received large print test booklets for end-of-year testing.  He received teacher's notes since it was difficult for him to take notes due to his CP.  Teachers would enlarge assignments for him if they thought it was necessary - it was easier for him to write in larger spaces, etc.  He has always used some kind of keyboard or laptop for school work due to his fine motor issues, so he could increase the font size. He is an auditory learner.  

His vision wasn't much of an issue at school.  When it was time for screenings with the nurse, they would tell us that he failed the screening.  We would tell them that he was being seen by a pediatric ophthalmologist, and that was the end of that.

He made it through elementary school without his vision being an issue regarding his education. We have homeschooled him for the past 6 years and are now into our 7th year.

This summer we had to switch eyecare providers due to a staff cut at the Naval Hospital.  We knew exactly who we wanted him to see.  We have a friend from church, Andy, who is an ophthalmologist.  S has a good relationship with him, so we knew it would be a good match.  

After the initial appointment with Andy, we saw S's acuity on his prescription.  This was the first time we had ever seen that.  We did what most parents do and Googled “visual acuity”.  At that point, we knew that he was going to be getting a new label to add to his medical resume.  S had another appointment with Andy, and they were trying out some low vision tools to see what helped.  It was at this appointment that we were told that S would be referred to the Virginia Department of Blind and Vision Impaired (DBVI).

We spoke to DBVI within 24 business hours of this appointment.  Another 48 hours later, we had an Education Specialist at our house to talk about S, his vision, and its impact on his education. She was extremely surprised that he was not identified as having Low Vision earlier.  There was never any reason for him to be referred to a Vision Impaired Teacher while he was in public school because he was doing well at school (better after he was diagnosed with ADD).

Long story short, at this point in his life his vision isn't impacting his education where he needs extra assistance. Because S is so near-sighted, it is actually beneficial for his up-close reading. He takes his glasses off to read.  He reads books with normal size print.  Because he is homeschooled, we play to his strengths.  We do a lot of computer work.  We do a lot of reading aloud to him.  We use audiobooks.  We use a lot of DVD lectures.

Next year he will be attending college.  We have known that he has to ask for accommodations to be successful at school.  He went through testing last year to get documentation for his accommodations.  This label actually gives him more support for some of his accommodations. He knows working with DBVI gives him more tools for his educational toolbox.

S said it best, "Just when you think you have it all figured out...".  I am so thankful that we have such wonderful people working with us to help S be all he can be.  

You know where to find me...on the couch with chocolate.


  1. Interesting post!! I found your blog via Love That Max and I'm very glad that I did! :-) I love that homeschooling allows you to play to his strengths and work with his low vision issues. I don't have low vision, but I'm a huge fan of audiobooks!

    I'm currently a college student with CP (although I have different needs than S), and I'm very glad to read that you've been proactive in getting him tested for accommodation documentation. College was a huge adjustment for me at first -- those first couple of weeks, especially, were rough -- but eventually I settled in, and it's been such an amazing phase in my life so far. It's really proven to me that I *can* be independent.

    And I fully support your "on the couch with chocolate" mantra! ;-) Chocolate helps with everything!

    1. Thank you so much for your supportive comments. I look forward to reading more of your blog posts. I am going to encourage my son to read some also. I think they will be very meaningful to him. We may have to pick your brain for helpful tips for college :).

    2. Please do pick my brain if you have any questions about anything! I would love to share my college experiences with you guys. :) And thanks for the encouraging comment on my post!

  2. I am so glad both you and S are taking in this new label so well. I am totally blind also with additional diagnoses, and my parents used to be resistant to additional labels because they feared they'd limit me. I like your approach that the low vision label will give S more reasons to ask for accommodations. I hope it won't limit him in his choice of education and future careers.

  3. I just found your blog through Love that Max. I don't believe I have ever read it and I cannot believe that! Myself, I am currently on the couch with pizza but on the couch with chocolate speaks to me! I found this post very interesting. I hope to learn from you, and maybe you can learn some things from me.

    1. Thanks for stopping by! I went to your blog and read through some of your posts. I look forward to reading more and sharing your blog with my son. I really enjoyed your post "Being Disabled VS Having a Disability". I also enjoy pizza on the couch.