Today We Help You Help Your Cortical Vision Impaired (CVI) Child

Last November, we presented you, our readers, with 30 Days to Understanding an L1 Syndrome family. 30 facts about L1 Syndrome, one fact per day, were presented to our readers. Back before I delivered my son, I wrote a post about what I knew about L1 Syndrome then–the night before I delivered (I delivered January 26, 2015). Then in mid-June, I shared a post about what L1 Syndrome REALLY is. You know – all the stuff I learned in the 5 months of being a mama to an L1 Baby. I even wrote a Day in the Life blog.  Two of my fellow L1 Mamas also have blogs. Tracy writes at xlinked1. Tonya writes at Surviving to Thriving. And my closest L1 Friend,  Jessica, has created Med Mommy on Facebook all in attempts to spread awareness about L1 Syndrome.

One thing I want to share with you…. Prior to Noah’s birth, I knew that hearing loss wasn’t that uncommon with severe hydrocephalus. I was prepared when we were told that Noah did not pass his hearing test. What I was unprepared for was when we learned he also was blind: cortical blindness to be exact, also known as Cortical Vision Impairment. For whatever reason, I had been teaching Kara, my three year old, sign language since birth. I was prepared to teach Noah signs as well. I don’t know Braille … that scared me… and the pressure of his head fluid on his brain is what caused this. Then our ped’s neuro ophthalmologist told us that even if I spent time learning it… Noah learning to comprehend itty bitty dots would pose huge issues. With adducted thumbs, he wouldn’t have the use of that thumb, and with other neurological issues, he wouldn’t understand feeling dots anyway. Heart-shattering, right?

Who all reading this knows me as a person? When do I ever avoiiiiid an argument. My daddy says I’ll argue with a brick wall. BUT, I need ammo. I argue what I can backup with facts.  Soooo… off to the research. What did I learn? Amazon has TWO books on CVI. The internet has all repetitive stuff, most of which — while not useless — isn’t in much depth.

What our peds ophthalmologist failed to tell us though… was that I could teach my son to see!!!!! While not a guarantee… I plunged. I purchased Little Bear Sees from Amazon.

I found my son a vision therapist and contacted our pediatrician to ask for the referral.  By 3-1/2 months old, we were in vision therapy.

Now we are 18 months old. We see more than our pediatricians, ophthalmologists, neurosurgeons, or anyone else ever believed! I want to help you help your kids! I want you to know what we do, what we go through, and how we can help our children!

And in November we will be posting 30 days to Understanding an L1 Family again as well!