Overview I wanted to share here, too...

So, I recently joined a blog for parents of special need's children, & I posted about my family to introduce ourselves & more about Emily. I figured, some people may not know many details(not that this communicated half of the details, just an overview, really), but I am posting it on mine if people would like to read it:


Hi, my name is Liz, & I am new to this group. It was introduced to me by another parent of a special need's child. My husband, Louis & I, & our two girls, Emily & Leah live in Texas. My daughter Emily is 6 yr. old, & was diagnosed with Optic Nerve Hypoplasia with Septo Optic Dysplasia at the age of 5 mo. She is mostly blind, with what little vision she does have being inconsistent, non functional & not useable. She is our angel girl & it has taken years to finally recognize that "blindness is not a tragedy." Her blindness has affected many other area's of her development. She is mostly non-verbal, in the fact that she will randomly verbalize, but it's not usually intentional, or appropriate. She cannot communicate yet, her wants or needs, which can be frustrating at times, on both sides.


She has some mobility issues with hypotonia(low muscle tone), etc. & developmentally is only up to a 2-3 yr. old in many areas, some areas even less. Emily also was diagnosed with PDD-NOS, not because she is truly autistic, but that because of her sensory needs due to blindness, she has many autistic like traits/behaviors, so we find the same therapies help her get alot of the sensory input that she needs. 80% of our sensory input is sight related, so without her sight, she is always so "sensory hungry."


We are blessed to have a wonderful private OT who also provides her aqua therapy, & we have a wonderful speech path that has been with us for 3 years now who helped Emily go from baby babble if we were lucky, to a 72 word vocab. Now we are just working on trying to get her to use it intentionally, instead of randomly. Her younger sister, Leah, is only 3 years old, but has really taken on the role of being the big sister & helping to guide Emily around, etc.


I love both my girls, & it's a journey everyday. We are blessed to be on this road together. It has had it's many up's & downs. I didn't handle all of this too well to start(who does?), & I don't know where her path will lead, or what independence she may or may not have one day, but that's how we do this, one day at a time, adapting everyday to a sighted world, helping her to communicate, love, & be proud of herself. Blindness is a "low incidence" population as I have been told many times, especially when they are as delayed as Emily, but I love meeting other parents of children with special need's, & hearing about your journeys. I don't know where I would be as her parent without the support of my husband. He is such a hand's on dad, & Emily is the biggest daddy's girl there ever was. 


I look forward to getting to know & read about everyone's experiences. God Bless- The Johnson Fam!


Anyway, I'm always open for questions, etc. about anything, especially Emily, blindness, etc. so if anything I ever blog about sparks a question, ask away : )