I know, some people might read the title of this post, & think "what!"? But, I have been going over & over things, people, places, groups, etc. that we would otherwise not have been aware of, or a part of without Emily being blind. Now, yes, Emily does have her own set of challenges, that are unique to her, most people who are blind, don't have any of the "extra" special need's that Emily has right now(just to clarify, these are unique to Em), but I am so grateful for the examples & high expectations the blind community has & achieves everyday that my baby girl will be a part of. I cannot wait for Emily to follow in their footsteps, & to put all the "assumptions" or "blindness myths" to bed!
There is a group called the NFB(National Federation of the Blind), & I have been recalling the D.C. Seminar I attended last Jan. when we went to Capitol Hill to advocated & fight for blind rights. I pray I get to go again this coming January! I know that the stress & battles we fight now, build the future for our blind children to have successful lives in a sighted & hopefully educated world. The NFB's motto is "Blindness is NOT a tragedy!" I love, love, love this. I want people to realize that blindness isn't cancer, it doesn't have to be "fixed."
For Emily, specifically, there is not a "cure." So far, I have been kind of grateful for that, because I want her to know there's nothing wrong with her. That she's a perfect, fun, loving, smart, beautiful, silly, wonderful girl!
All of this was brought on by our "field trip" this weekend with Emily's therapy center, Faith Pediatric Rehabilitation. Now, I've always been grateful for the groups we are a part of, TPOBC, KDT, NOPBC, NFB, etc. They are AMAZING, but I didn't have this blog until a few weeks ago, so I am blogging about this, lol. This weekend, it was celebrating FPR's 5 yr. anniversary, & Faith, the owner, is Em's OT, & she's amazing. We are SO grateful for her & her practice. It just meant a lot to go & have such a wonderful time with ladies who dedicate their lives to caring, loving & helping our children, blind or sighted, she's treated the same.
We will strive for Emily to be a successful braille reader, HS graduate, hopefully a college grad.(I haven't been to college yet, so I can't hold that against anyone, lol), & a thriving young woman(which I am so not ready yet for that, lol). I know I wouldn't be who I am, the kind of person I am, I know my family & those around us wouldn't have the knowledge we do now, or have the special experiences we are blessed to have if Emily wasn't a part of our family. I am so grateful for my family & for the "little" things we get to witness everyday as Emily grows up.
Last thing, on Saturday, on our field trip, Emily was on a swing, & she went "WEEEEEEE!!!!" with the BIGGEST smile! Now, to anyone else, they might think "K....big deal" but for Lou & I we were smiling, clapping, & cheering her on so proudly. When you have special need's, you learn to appreciate everything! She already has come so far speech wise. I love being around other blind children & seeing how well they are doing, it helps to encourage us that one day Emily won't be like a "sighted kid," she will be as independent, & strong as another "blind" kid : )
Okay, I'm off my proud parent of a blind child soap box now. Everyone, educate yourselves, support, & promote independence!
Monday, September 12, 2011
Thursday, September 1, 2011
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 : )
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 : )
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