The image below is a test reading/interpretation and a measured indication of how much light our daughter perceives. The key and charts will guide you in understanding:

EDIT: This conversation has definitely slowed down, but I check my inbox several times throughout the day, so if you comment, I should be able to see and will try to respond back! Please feel free to ask anything you might be curious about, or if you have a story you'd like to share, I'd love to hear it!

Comments: 629 • Responses: 109  • Date: 

wickedwonderful183 karma

I don't want to sound insensitive, but is he/she developing more slowly (walking/talking/potty training etc) than a child that isn't blind? Is anything developing more quickly?

elepharas399 karma

Good question. It has absolutely amazed me to learn all the things that blindness effects. Vision is, after all, 90% of how we learn. I understand that having a lack of vision varies with each child, but it has delayed her development particularly in her gross motor. It all started in the beginning when your baby is supposed to have an allotted "tummy time" each day to achieve strong back and neck muscles. She HATED it and would never lift her head to because she wouldn't use that time to look up and around as other babies do, and had no incentive. As she kept getting fatter as babies do, she lacked the strength and coordination to start moving. She didn't roll over until 8 months (typically it's 4), she sat up on her own around the normal time, but again it was hard to motivate her to move to crawl toward things she can't see, so she didn't do that until 15 months (typical is around 7) She is 17 months and exploring! But won't walk independently until 19 or 20 months. This is all quite typical for kids with blindness. As far as other delays, there is a possibility of speech delays, and self-help skills, too. There are lots of obstacles, but amazingly, usually blind kids will be caught up with their peers by age 5!

ZiggyManSaad48 karma

As the father of a blind 3 year old, it is difficult. Very difficult. My daughter is just getting her gross motor skills "mastered." For instance, she doesn't chew because she doesn't have the muscle tone in her jaw. I suggest getting a "z-vibe." It's been helping my daughter in the past couple of months.

elepharas28 karma

Thanks for the tip! We've been lucky as far as eating goes, but have some other sensory issues. Good luck to you and your family. It's hard work!

jutct23 karma

My younger daughter has Sturge-Weber Syndrome, and is functionally blind. She's had delayed development, but she just turned 7 and the progress she's made is amazing. Good luck to you.

elepharas17 karma

That's fantastic! Thank you!

elepharas276 karma

Also, her imitation of sounds and words developed way more quickly than typical! At 3 months she was making bird sounds!

choixpeau126 karma

  1. How did you find out he/she was blind, and how old was he/she at the time?

  2. Are you learning Braille so you can teach him/her to read?

  3. Sometimes when I'm out in public, random babies sitting in strollers will stare at me or wave at me or otherwise try to engage with me. Is there a blind baby equivalent of this?

elepharas254 karma

  1. When she was 1 month old, we noticed that she wasn't "tracking" objects and her eyes were displaying Nystagmus which is a secondary condition of her blindness which causes the eyes to rove about involuntarily. Usually it takes a while for an infant's eyes to literally learn to see so they might do funny things, so we kept watching it. After another month, we knew something was up, so we took her to an ophthalmologist. He could tell almost instantly that she wasn't visually responsive.

  2. Absolutely! I have already learned the Braille alphabet, and can read some words through sight (sighted people are to learn to read Braille through sight), but I can actually read some through touch, too, although I am quite slow. That's non-contracted Braille, though, where it's just the letters translated. Contracted Braille is another story! It's like short-hand Braille. Lots of memorization to be had there. It'll be tough work! We've started some early-literacy stuff already, like teaching her to trace trails of "dots" or lines with her fingers.

  3. She is very interested in hearing people talk and gets very very quiet and still when she's listening. This can make it seem like she's not paying attention, but I can assure you she is! The best way to interact with a blind child is to greet and introduce yourself to them, and then touch, rather than the other way around, as that can be quite frightening. We will tell her when people are waving and she'll wave back, too! :)

choixpeau189 karma

She can wave even though she's blind??? That's the most awesome thing I've heard all day!

Edit: by which I mean "she can understand the concept of a gesture", not "she can move her arms"

elepharas107 karma

Oh, sorry! I thought it was a joke! Yes, she does understand that which is quite amazing! :)

elepharas55 karma

Hahah. Well, I've had to say much more silly and obvious things to people than that.

Ozy-dead14 karma

She can wave even though she's blind???

My psychology professor did a research in the 70s where he studied gestures of kids blind from birth. They concluded that some mimics and gestures are more innate behavior rather than learned. Amazing stuff.

elepharas4 karma

That is amazing. We were talking about the smile in another thread. It's innate. Which I think is absolutely beautiful -- that we experience so much joy that it changes our expression into a lovely display of happiness. <3

Pissflower22 karma


elepharas58 karma

She only knows others are waving when we tell her. Then we say, "Say hello!" or "Wave!" Then she does.

We initially moved her arm for her during greetings or goodbyes along with the words. Most gestures she learned because we continually praised her, and she liked the reward!

IHaveARagingClue19 karma

Well then she's the average toddler. I have a 2 yo and she wouldn't do anything if we didn't tell her how "pwitty" and "pewfect" and amazing every move she makes is. Lol!

elepharas15 karma

Hahah! They love it!

Iamtotallyserious81 karma

I was born legally blind in my left eye, so I kind of remember occasionally running into walls....Has this happened yet? How do you teach your child to navigate through the house?

Thank you for doing the AMA so others can understand how to cope with/understand the situation. I wish you and your family luck as you help your child overcome the added challenges he/she will unfortunately face.

elepharas124 karma

She has! She's a tough cookie, though. She just keeps on going!

Thank you for saying so and for your well-wishes! I'm now a lifetime advocate for sharing stories of people who are differently-abled, in the hope that we will continue to open our hearts and minds to create a welcoming community of acceptance, love, and an ability to see the potential in each and every human being.

thehost12372 karma

Hello there, one quick question. What was your first reaction when you found out that your daughter was blind?

elepharas220 karma

Honestly, my first reaction was denial. It just COULDN'T be happening to MY baby. That's what I thought.

My reactions to it all (and my husband's, and many others' reactions who find out their child has a disability/disease according to our social worker) follows the five stages of loss and grief:

Denial and isolation, anger, bargaining, depression, and acceptance.

We've moved in and out of all of those, but I feel like I'm mostly in the acceptance stage now, but with episodes of depression.

It sounds awful, but our social worker said it's okay to mentally grieve and accept the fact that the little girl we thought we were going to have "died." Not the little girl, of course, but our idea and dream of her. It sounds so horrible, but in fact, that's what I needed to do to move on and accept my daughter exactly as she is. To love her completely without regret or wishing she was something else I thought she would be.

And honestly, it isn't hard anymore. She's too damn adorable and lovely.

princessimpy140 karma

Did your social worker give you the Welcome to Holland story ?

elepharas68 karma

Yes. I cried uncontrollably. :(

princessimpy35 karma

I'd say so, it sounds like you're doing an incredible job though enjoying Holland. :-)

elepharas28 karma

I love that you say it that way. We certainly are. <3

elepharas13 karma

And I just read it again and cried! But, it was more of a happy cry this time. :)

wldouglas2369 karma

What is the cause of her blindness? I have an eight-year-old son with LCA.

I'm trying to remember and think in what areas his development was delayed. His gross motor was never too far behind. He never did really crawl, though. He would scoot around on his bottom leading with his feet. I assumed this was a defensive thing so that he wouldn't run into things with his head. He did start walking at a relatively normal age.

He was slightly speech delayed and was in speech therapy while in early-intervention preschool. By the time he was four, he was testing out well ahead of age standards for speech, and no longer received the therapy.

He's in the third grade now, and is well ahead of grade level for reading and writing, and slightly ahead of standard for math.

My best advice is to let her go like a sighted child. She'll run into things occasionally, and get a few more bumps, scrapes and bruises. Being around other blind children at conferences, and other functions, I can immediately tell which children have had overprotective parents versus those that have not. Expose her to all of the same activities as her sighted peers. Don't be afraid, or nervous for her!

Good luck!

elepharas57 karma

We suspect she has LCA, too! We cannot find any agency who will test for it currently! NIE is not currently testing for it and only banked her blood.

Our daughter also only scooted on her bottom for a long time before she began crawling!

Thanks for the advice! Your son sounds great! Congrats to you and your awesome parenting!

Syndicationwhen22 karma

I think there is a pediatric ophthalmologist at either UCLA or USC who deals with LCA more than probably anyone else. You might look into that area of the country if you wanted to do further studies. Unfortunately I don't remember exactly where he is or the name.

elepharas21 karma

I freaking love Reddit. Thank you!

wldouglas2318 karma

What is NIE?

elepharas25 karma

Oh sorry. NEI. National Eye Institute.

wldouglas2322 karma

The FRR (Foundation of Retinal Research) may be a good resource for you, and might be able to refer you to someone for testing. I know that the Children's hospital in Cleveland is set up to test for it as well as Seattle Children's.

elepharas11 karma

Thank you so much! My husband and I will look into it!

bettyrumble7 karma

What is LCA?

elepharas16 karma

Leber Congenital Amaurosis.

"Leber congenital amaurosis (LCA) is an inherited retinal degenerative disease characterized by severe loss of vision at birth. A variety of other eye-related abnormalities including roving eye movements, deep-set eyes, and sensitivity to bright light also occur with this disease ... Within an infant’s first few months of life, parents usually notice a lack of visual responsiveness. Eye examinations of infants with LCA reveal normal appearing retinas. However, electroretinography (ERG) tests, which measure visual function, detect little if any activity in the retina."

dbh93715 karma

While not blind, I was a scooter as well. Never crawled.

elepharas12 karma

So was my friend's sighted baby! Our daughter's PT says its an effect of the back-to-sleep campaign and babes meeting their milestones later. However, lots of babies prefer to scoot, apparently!

BiologyRulez62 karma

My first thought, "How is peek-a-boo?"

Aaaaaaaand I'm going to hell

elepharas119 karma

Ha. Actually she loves it! She likes to cover her eyes and lift her hands to get a rise out of us. (She does have light perception!)

EDIT (just remembered this we did when she was younger): There's another version of peek-a-boo where I'll cover my face with a blanket, and then ask, "Where's mommy!?" She'll feel for the blanket and pull it off, and I'll say, "Peek-a-boo!" and she squeals with delight!

socialclash38 karma

Is there any likelihood that her receptivity to visual stimulus will improve in time, given that she is light-perceptive?

elepharas49 karma

Love the question! She has learned to use what vision she has. We are thinking she might be able to see some forms of objects, but it's so hard to say. She is starting to seem to "know" where some things are, but we aren't sure if it's by memory or if she's utilizing her vision better.

grandomegaboss2 karma

Wait so what colour would she see then?

elepharas10 karma

The cones layers in her retina are most affected (and that's where colors are perceived), so it's likely she's colorblind, at least to some extent.

zahbos49 karma

I know people baby proof there homes but what extra things do you do to blind baby proof a house?

elepharas56 karma

We've made our house extra bump-proof! She absolutely cannot be left on a bed or couch (or near stairs, etc.) unwatched. She hasn't learned those boundaries yet. Very scary for us!

IShouldSayThat43 karma

Also, I don't mean to be rude but is she aware that he's blind?

I wish you the best of luck and all the patience in the world.

Edit: he to she

elepharas104 karma

She doesn't know yet. She's only 17 months old. Although online friends of ours who also have a blind daughter have told us their daughter who is 2 1/2 and can hold a conversation is starting to become aware of things others are talking about that she can't perceive. So they've started to try to explain it to her. And thanks! :)

Randomino68 karma

I have spent the last few minutes trying to comprehend how you would explain the concept of sight to someone that has never experienced it. Then everything that goes with it, what is light and darkness for example, to someone who can't see?

It is like trying to explain to someone with no sense of smell that you can 'taste' something with your nose without touching it. Or someone without hearing that things generate vibrations in the air that are picked up by ears acting like a radar dish and then the brain decodes the vibrations.

Think I need to sit in a very dark room and ponder for a bit now.

elepharas59 karma

I have been trying, too! It's so damn hard! I have many challenges coming my way!

She'll teach me so much. :)

natedt8214 karma

as all children do :) I can only imagine what you will learn with her :) good luck sound like your doing a great job!

elepharas13 karma

Thank you, sweets.

nosoyunchico13 karma

And they probably think, "What is blindness, to someone who can see?"

CorduroyMagic17 karma

My first thought was, well, duh, it's closing your eyes or not being able to see through a blindfold or something. Then I realized they wouldn't be able to comprehend that either and technically I still "see" black or darkness. I tend to think of blindness as walking around with your eyes closed or a blindfold on, but, no, they wouldn't "see" that darkness even, and then my brain imploded.

elepharas21 karma

Also, think about how your thoughts and memories and conceptual understanding are formed! Through images! That's what I can't comprehend when I think of how she thinks!

move_along_cupcake11 karma

I'm not experienced in this area in any way, but I'd bet that her memories and thoughts will probably be much richer than the ones we have as sighted people. Her brain will probably pick up on smells and sounds and textures that our brains filter out in favor of retaining images, so she'll have the real experience instead of the cheap shortcut of a picture. Our memories may be a movie, but her memories will be a book.

elepharas10 karma

That's such a cool way to think of it! I can't wait until she's old enough to show me the world in her words. :)

nosoyunchico18 karma

I've heard it described as, "the same way you see through your elbow."

Moonhowler2210 karma

Every time I see that expression, I try to picture what that would be like. As the guy above said, it's not black. It's literally nothing. There is no sense. Black is devoid of light. Nothing is devoid of everything. We can't even fathom what that's like. It's a totally alien concept to those of us who can see.

elepharas6 karma

So true. She does have light perception and seems to be able to see some forms/shapes. She only sees peripherally and may not or only see some color. Try wrapping your head around that!

elepharas6 karma

Ha! Wow. That actually makes sense to me. Thanks!

choixpeau10 karma

OMG, imagine having to explain that to a 2 1/2 year old! Have you figured out how you're going to explain it to her when the time comes?

elepharas20 karma

I haven't. I hope it comes naturally. Luckily, we have an amazing center here for children with visual impairments with great people who can help us answer all those types of questions we'll have like that.

karmanaut42 karma


elepharas18 karma

Thanks! :D

Rushkins41 karma

She is an absolutely beautiful little girl :) as her big uncle I very much enjoy making loud and silly noises that she immediately picks up on and will repeat. She has a very special and already complex and joyful personality. She always makes people laugh in the room she's in with her noises and sometimes she will mock a noise someone will make, or a funny laugh they laugh, it is as if she doesn't have the filters we have that keep us from being ourselves and really being in a moment and enjoying ourselves (:

elepharas18 karma

Aww. Thanks, brother. :)

sandandsoda5 karma

Aw she sounds like a cute little mocking bird

elepharas6 karma

Hahah. At times, she is! :)

ilikeyoutoomonsieur41 karma

I just wanted you to know that one of my mentors at university is someone I look up to for her accomplishments... She has a PhD in a male-dominated field, is an accomplished musician, is a leading researcher on Haptics/Human-Compupter interaction, is a professor at a top university, rides horses, runs marathons, and has been blind since birth. She has the best damn sense of humor I've ever come across, too.

elepharas27 karma

Absolutely! I believe it. My goal as a parent is to help my daughter see her potential.

FentanylFreak38 karma

Serious question, as a father I enjoyed watching my child learn to walk, with a blind child I would think there would have been some issues with learning to walk, am I correct? At what age do you introduce the cane?

elepharas49 karma

(Reposted from above): It has absolutely amazed me to learn all the things that blindness effects. Vision is, after all, 90% of how we learn. I understand that having a lack of vision varies with each child, but it has delayed her development particularly in her gross motor. It all started in the beginning when your baby is supposed to have an allotted "tummy time" each day to achieve strong back and neck muscles. She HATED it and would never lift her head because she wouldn't use that time to look up and around as other babies do, and had no incentive. As she kept getting fatter as babies do :), she lacked the strength and coordination to start moving. She didn't roll over until 8 months (typically it's 4), she sat up on her own around the normal time, but again it was hard to motivate her to move to crawl toward things she can't see, so she didn't do that until 15 months (typical is around 7) She is 17 months and exploring! But won't walk independently until 19 or 20 months (typical is 12). This is all quite typical for kids with blindness, although some are more risk-taking than others. Our daughter happens to have a more cautious personality, and that makes all the difference. We will see her take her first steps one of these days! It will just be a little later than our friends' babies.

As soon as she learns to walk, we'll introduce a starter cane, which is like a PVC pipe in the shape of a triangle. That's just to get her used to using a tool to feel what is in front of her and to help her keep her balance. After she's walking fairly well, she'll get her first white cane! :)

DinosaurPineapple37 karma

Is there a general sense of community with other blind people/parents of blind children, as in deaf culture? What changes have/will you have to make to your home to accommodate her needs?

elepharas40 karma

There is! We are a part of a fantastic organization here that specifically works with families at the early intervention level, and sponsors other activities and programs for school-aged children/teens. We are so so fortunate! The community is fantastic! I wasn't aware of the one in the deaf community!

ObviouslyATurtle37 karma

Are you planning on getting a guide dog for your child? If so a puppy or a grown dog?

elepharas41 karma

We would love to one day. We'll let her decide if that's something she would like. I think the recommended age a child should be when he/she gets his/her first support dog is around 12 years of age. I don't know for sure, but I think they have to start training as a puppy, so we wouldn't have the dog in our home until it was done with training as a grown dog.

a11ynerd22 karma

I'm so glad you're planning to let her decide! I'm the husband of a woman who's blind since birth, and she hates dogs. She's never wanted one, and she does just fine without one.

She has some blind friends with dogs, and there are both advantages and disadvantages. Yes, you can travel faster with a dog. On the other hand, there are a lot of things you might want to do in life where it'd be really inconvenient to have a dog around, and it's a huge responsibility to have the dog around.

elepharas10 karma

That seems about right. Some people are just not dog-people! Our daughter hates when dogs lick her face. Ick! ;)

ObviouslyATurtle2 karma

Thanks for the reply! I heard a good time to take a guide dog into a family is when the child is young-ish, it adds a sense of comfort knowing as they have grown up with the animal all their life, it becomes their friend, all the best to you and you child!

elepharas1 karma

Aw. That's so cute. We'll have to think about that!

CorduroyMagic27 karma

I heard you can get miniature guide ponies

elepharas37 karma

Ha! I'd prefer a guide-cat, personally.

CorduroyMagic194 karma

The cat would probably give 0 fucks about what you ran into

elepharas41 karma

I keep LOL'ing at this.

Katelyn8910 karma

Seriously? That's the coolest thing ever.

elepharas26 karma


compier37 karma

Do you scare her a lot by accident? (since she cannot see you coming) *edit he to she

elepharas92 karma

I've (or my husband) have never scared her (she gets a kick out of hearing our footsteps coming!) because we've always been mostly around and she's keen on feeling us out, but others have scared her several times. She was so frightened by my dad's (her grandpa's) deep voice when she was a baby, but now she loves it. We can tell she's starting to recognize voices of close family, friends, and her therapists.

Also there's a whole technique for greeting her that we try to teach to others. It's helpful if we tell her a new person is in the room, then if that person says hello and their name, and then reaches out for our daughter to touch them. People who are near her often have some special things that help her remember who they are: a watch, bracelets, rings, etc. She's very interested in what jewelry people are wearing! :)

compier5 karma

Thanks for the extensive reply!

elepharas8 karma


Juagoo34 karma

No question, just wanted to say I admire you immensely.

You sound like a wonderful parent.

elepharas14 karma

Wow. Thanks!

loseitloser26 karma

I cannot possibly contribute or even say I understand, but I wish you the very best in raising her. She wil grow up to be a fucking amazing engineer or a doctor etc, not despite her blindness but because she had wonderful parents like hers and of the wonderful childhood and life that is right now ahead of her.


elepharas10 karma

Thanks, man! That means a lot. I hope she comes across many people like you who will see her potential rather than seeing her (dis)ability.

nyran2023 karma

Wow....I have one who sees and I can't imagine going through that. God bless you!

elepharas26 karma

Thank you. It's definitely another layer of difficulty placed on the already hard task of parenting.

kentnasty22 karma

Dear OP, I am a friend of your brother, and we were talking about this earlier today. We recently installed descriptive audio devices at the movie theatre I work in. It's basically a pair of headphones that plays the movie in one ear and a narrarator telling you what happens in the other ear. This got me thinking. At your child's age, does he/she enjoy listening to kids shows on the television? What do you use to keep your child entertained?

elepharas22 karma

Haha! Hey! I know you. That's so cool the theatre installed those!

Many DVDs have that option, too!:

She doesn't pay much attention to TV at all. We try not to keep it on much, so there's not as much "audio clutter," but when we put on kids' shows, she isn't too responsive. She loves any and all music, though!

Poopitydoops21 karma


elepharas42 karma

To answer this, I'd have to split it up into two categories: the biggest obstacle from solely the parental perspective, and our biggest obstacle in actually parenting her.

From the parental perspective, I'd say the biggest obstacle has been (at this stage) finally coming to a point where I accept that my daughter is blind. I know that sounds strange, but when I was pregnant with her, I dreamed about all the things we'd do together -- point to pretty things outside, read books, color pictures, run around in the yard playing, snuggle and watch movies, look at animals in the zoo ... it took a long time for me to realize that none of those things would happen. It took a long while to realize that instead they'd ALL happen, but in a totally different way than I'd ever imagined. Now, our world is full of so much more texture, of sound than I had ever realized. She gave me that gift. It's hard to admit, but I still get a raw feeling when I see my friends playing with their children that are her age because I am reminded of all the things I had hoped to do with her, but it isn't for long because I've learned to appreciate what they have with their children, and to be happy with what I have with mine. It's been a long "healing" process for me, but I'm getting there. She makes it easier. She's so wonderful. Better than I could have ever imagined. <3

Menelly9 karma

You. You are an awesome parent. I do a lot of work with parents of Autistics and I rarely see them get to the acceptance level you have. Your daughter will go far with you behind her every step of the way.

Really. You're awesome.

elepharas14 karma

Thank you so much. It takes a lot of work and effort. I am lucky to have been given a good start from my parents. I owe it to them to give her a good life.

elepharas19 karma

To answer the second part of this question (and what you were probably actually asking. ;)): We've put the most work into her physical development, but what worries me the most is her cognitive understanding of everything. When we use our vision, we make sense of all the sounds we hear, the things we feel, the things happening around us, people's gestures and facial expressions, etc. She's missing out on that information. My job as her parent is to fill in the blanks. Which, as you can imagine, is extremely challenging and confusing.

elzorrodorito19 karma

Does she have any siblings? If so, do they understand?

elepharas37 karma

She's an only child, but I hope her future siblings will understand!

CorduroyMagic17 karma

I don't know if this is a really ignorant question but, is there a chance your future kids will be blind? As in, is this just random or does something contribute to blindness that you are "prone" too.

elepharas29 karma

Yes, there is; if in fact her blindness is due to a recessive genetic disease, which we're not sure about yet, but presume. There is a 1 in 4 chance our next child(ren) may inherit it. Apparently my husband and I happened to both be carriers of this although neither of us has blindness in our family histories.

Strange to think what sorts of diseases we might be carrying around in our genetics unbeknown to us.

aParkedCar16 karma

I don't have a question but when I was reading through your responses I can tell you're excited to learn new things with your little girl and you're going to be/are a great mother. You're very positive in what would be viewed as a negative situation(I tried to word that without sounding like an ass) and I think your daughter will benefit from it greatly!!!

elepharas10 karma

Thank you so much. That's absolutely the perspective my husband and I (and our family and VI community) are working toward creating. Now, let's just hope the rest of the world opens more doors for her than they close.

SongOfUpAndDownVotes15 karma

Do you have any proof?

elepharas5 karma

What would be the best way to prove this without revealing my daughter's identity and therefore violating her privacy?

Fsumobility14 karma

I am a teacher of students with visual impairments, as well as an orientation and mobility instructor. I work at Florida State University and coordinate the program that trains new mobility instructors. I'd love to perhaps assist you in finding resources for you and your family as well as introduce you to a good friend with Lebers, who is quite capable. It sounds like you all are doing great and if there's anything I might assist with, feel free to get in touch.

elepharas4 karma

Thank you so very much for your offer to help! I will keep you in my thoughts! Thanks for all your good work.

LobsterTache13 karma

How did you find out they were blind?

elepharas23 karma

Usually infants take a while to start responding to things visually as they're literally learning how to see, but by the times she was two months (we had some feelings that something was off starting at her first month), she wasn't "tracking" or following objects, or making eye contact, and her eyes continually roved about in pendulum-like movements which is a secondary condition of her blindness called nystagmus.

keen510 karma

Do both of you enjoy playing catch?

elepharas49 karma

Actually, yes. We roll a ball back and forth. :)

gareth_the_jack9 karma

I currently undertake voluntary work with the CIB and the RNIB. I help out with an autistic and visually impaired gentleman as much as I can. He has diabetic retinopathy.

As I understand it, in most cases, pediatric blindness stems from an under-developed optic nerve. Is this true in your childs case?

What is the level of care she receives? Have they ever given you any expectation of sight in the future?

I'd also like to say that I truly admire parents like you and I think you all do a really great job. Inspiring.

elepharas12 karma

Thanks for your kind words! Fantastic work you're doing. I find YOU inspiring!

She was born with a retinal disease (most likely Leber Congenital Amaurosis) which caused the rods and cones layers in her retina to not be formed properly. Her optic nerve is in absolutely perfect condition. Her condition is quite rare, and I do believe you're correct in saying that in most cases the cause of blindness is from an under-developed optic nerve if I remember right.

Right now we're working at the early intervention level, so we are getting help from a vision teacher, a physical therapist, and soon (when she starts walking) an orientation and mobility therapist. We may also have an occupational therapist and a speech therapist if need be.

Actually, one gene affect by the condition we think she has is currently being tested for and is in the last trial phase in gene therapy before the research is sent to the FDA for approval of common practice.

Nadamir8 karma

Just wanted to say thanks for this AMA. I've got a cousin who has been blind since birth, has light perception and some color perception in the very corners of her eye. Unfortunately, she has the added disability of having a moderate case of autism, so it's interesting to me, personally, to learn about an NT (neurotypical, i.e. without autism) person with similar visual impairments.

Also, if you're ever making a poster or something when you need large Braille, you can use like craft glue to make the dots and let it dry to make large Braille letters. What I like about this method is you don't have to reverse everything like you do when you use a stylus type thing. Furthermore, if she has some color perception, you can download Braille fonts for computers and when she gets old enough, you can put large font size Braille over a background of that color to make labels for things that can't have raised dots. (i.e. CD's or DVD's)

And lastly, I found this really cool: it's a Braille smartphone.

elepharas3 karma

Awesome smartphone! And thanks for all the other neat ideas! :)

Your cousin seems to see very much like our daughter. I wish her all the best.

Also, a question for you: I have heard that other kids with blindness have had mild forms of autism. Has anyone mentioned that this may be due to the fact that not being able to see causes atypical behaviors "blindisms," possible less social interaction/understanding, and a likelihood of sensory processing issues to be exhibited. I mean, are they really separated cases of dis/abilities or are the traits simply "like" autism. I'm often confused by this.

umjammerlammy8 karma

It's not fair, it's just not fair... I'm really sorry. You are great parents, she loves you, I'm sure you know that. The fears I have a out my 2 year old are nothing compared to this.

elepharas10 karma

Thank you. We share so many of the same fears, though. They're just slightly different kinds. Good luck to you, kind soul. <3

kamonAUD8 karma

Can you talk a little bit about what you're thinking about in terms of education once she's old enough to start going to school?

Also, can you talk a little bit about what counseling you received from health care people, who was helpful, who wasn't, what you wished you had known from the start?

elepharas15 karma

This is our first child. We haven't looked too much into her schooling options, but we are working with an amazing early-intervention organization for the blind and visually impaired that will help us when we get to that transition point, and when we learn what her abilities/skills/needs are. There is also a school for the blind in our city.

Doctors were sometimes quite shockingly cold. The people who have been there for us were her therapists (physical, visual, etc.) and the social worker at the center for children with visual impairments. They've become a great community for us. I can't imagine not having them. We would have experienced such isolation!

CorduroyMagic7 karma

Maybe a dumb question: Did she smile/respond with appropriate facial gestures at the normal age? I've read that blind people (adults) all smile instinctively, which I find interesting, but I was wondering, I guess, how instinctively.

elepharas23 karma

No, no. Perfectly good question! She smiled at the same time as all other kids do. I thought that too -- how instinctual and emotionally-driven smiling is! She has such a hilarious sense of humor!

JustCallMeBreezy6 karma

What about traveling? Does she get scared in a car hearing a truck roaring by, or on a bus with alot of unknown voices? Any outside environment, restaurant, mall, how does she react? Has she ever heard a train passing by?

What are her reaction to those if any?

elepharas16 karma

She seems to not really mind any of those things, and gets rather excited about loud sounds! She thinks many of them are hilarious. I know other blind or visually impaired kids who are quite frightened by them, though. I hope she doesn't have an experience that changes her idea of loud faraway sounds. She does get scared sometimes by new sounds that are close to her, like the sound of a neighing toy horse, for instance. That scared her the other day! :(

elepharas7 karma

Also, I might add: she can get extremely over-stimulated in loud places if she's there for too long. I imagine it's like information overload without being able to completely understand what's going on.

MrsBeann5 karma

do you have other children, who could help her learn though play, or is she your first one?

edit: also, have you thought about her going to school? Is there a suitable school for her closeby, or will her schooling require you to move in the near future?

elepharas3 karma

This is our first child. We haven't looked too much into her schooling options, but we are working with an amazing early-intervention organization for the blind and visually impaired that will help us when we get to that transition point, and when we learn what her abilities/skills/needs are. There is also a school for the blind in our city.

MeNicolesta4 karma

In all true, raw, and honesty,how did you feel when you found out your toddler was going to be blind from then on? What thoughts went through your head?

elepharas12 karma

It was awful. I was in denial. I could only hear my heartbeat pounding in my ears. I was in shock.

And then, I got really sad. It has been an on/off journey of acceptance. It's hard to admit, but it's true and raw and I'll say it -- I sometimes miss the girl I never had, but only dreamed about.

But what I've learned is, my daughter is so much more beautiful and amazing than I would have ever imagined. All her little quirks and silly things she loves and laughs about -- like the wind, or the way she says her favorite made-up phrase "ah-ga-ga-geeeesh!"

Genius. I love her.

MeNicolesta6 karma

This brought a tear to my eye, I must say. I was born with a disability and I could only imagine how my parents felt being told. Thank you so very much for your honesty.

elepharas6 karma

I never thought about my words being felt by someone from your perspective. I hope I didn't bring you any pain. I of course see her now as an absolutely beautiful gift. I know it sounds corny, but it's true. She's shown me the world in a way I've never known it. She has taught me that "whatever I thought was more important than love, isn't."

Of course you want and think your child will be healthy and "perfect." But what I've learned is that having a "perfect" family is a silly dream. It means nothing compared to living and being in perfect love with someone regardless of what or who they are. THAT is what matters. She has given me that gift, and I would never change a thing about her. She is who she is and I love her completely.

I will note, my husband handled things differently than I did. He moved onto acceptance so much more quickly than I did. He's always just loved her and hardly thought the things I did. Everyone handles things differently. I am just a romantic sap at times. :/ But I suppose that in my nature has helped me see things in a more positive light now that I've gotten over my own sufferings!

Thanks sweetheart, for your post.

dlouisbaker3 karma

She is lucky to have parents like you. My heart goes out to you. Keep loving her. :) I'm gonna hug my little boy so much tonight when I get home.

elepharas3 karma

Please do! Children should get lots of hugs. :) Glad I could be of inspiration. She truly does teach me the lesson: it's the small things that count.

porfavorsenores3 karma

Does your daughter's blindness influence whether or not you want to have more kids?

elepharas9 karma

Kind of ... there's a 1 in 4 chance our next may have her condition, too. We're going to have another. Then, possibly adopt, as we've always wanted to.

natcatmeow3 karma

Have you thought about letting her experiment with musical instruments/take lessons?

elepharas7 karma

Absolutely. She loves music, as do all children.

Super_Pie3 karma

how tough is it keeping her from walkibg or crawling into walls and other objects

elepharas13 karma

She has light perception and can see some form (but no details and no central vision; she only utilizes her peripheral), so she navigates quite well! It's amazing. She does bump her head sometimes, but she just keeps on going! YOLO! ;)

MostDrunkest2 karma

Do you ever switch around furniture/whatnot to mess with them?

elepharas5 karma

Hah. No. But if I did, she'd probably think it was fun.

elepharas1 karma

Hahah. This is like the 5th time this question has been asked! She has light perception, so she's well aware of large objects around her. She'd probably think it was funny. :)

metallequa2 karma

Are you sending her to preschool?

elepharas2 karma

Yes. Not yet though; she's only 17 months old.

metallequa2 karma

Awesome! Have you looked into different kinds of programs yet (inclusive, deaf and blind, etc.)?

elepharas2 karma

We are currently working with an early intervention program that we are so fortunate to have in our city. They have an amazing center geared completely toward blind and visually impaired babies, toddlers, and kids! There is also a school for the bind here. We are trying to take one day at a time with some planning, but we haven't gone that far yet. We're still waiting to see what she can do. :)

WillWalrus2 karma

** All AMAs require proof.**

    * Proof should be included in the text of the post when you start your AMA. If it must remain confidential, you can message it to the moderators and we can verify you.

elepharas7 karma

I'm fairly new to Reddit. How should I do this? And what qualifies? A picture?

movebitchgetoutdaway2 karma

What kinds of shenanigans does the little chica get into?

elepharas2 karma

Hahah! All kinds! Those crazy tots!

Flexo_2 karma

Are there any procedures now or in the near future that could give her vision?

elepharas3 karma

As of now, there is no “cure” for retinal blindness, but “scientists have identified 14 genes with mutations that can each cause LCA (which is what we think she has). These genes account for approximately 75 percent of all cases of LCA. With this information, scientists are better equipped to develop preventions and treatments.

Clinical trials of gene replacement therapy for LCA caused by mutations in the RPE65 are now underway at Children’s Hospital of Philadelphia, Universities of Pennsylvania and Florida, and Moorfields Eye Hospital at the University College of London. Children and young adults who were nearly blind have had dramatic improvements in their vision after treatment.

USSGoliath2 karma

Do you plan on getting her surgery? What are the success rate?

elepharas4 karma

As of now, there is no “cure” for retinal blindness, but “scientists have identified 14 genes with mutations that can each cause LCA. These genes account for approximately 75 percent of all cases of LCA. With this information, scientists are better equipped to develop preventions and treatments.

Clinical trials of gene replacement therapy for LCA caused by mutations in the RPE65 are now underway at Children’s Hospital of Philadelphia, Universities of Pennsylvania and Florida, and Moorfields Eye Hospital at the University College of London. Children and young adults who were nearly blind have had dramatic improvements in their vision after treatment.

AdidasDegree2 karma

Have you ever thought would your life be like without a blind child? Would you have preferred your child not to be blind?

elepharas2 karma

Of course. Having a child who is blind is a very difficult thing to deal with, but I'd say my resistance to accepting her exactly as she is has been one of my biggest obstacles. She's taught me not to think of life as it "should have been," but rather "how it can be."

MrIndubitably2 karma

I got a few questions if you don't mind.

1 - Was your child blind from day 1, or was there a disease that took the eyesight away.

2 - Do you ever kind of "forget" that your child is blind? Even if for a split second like telling them to "look" at this.

elepharas3 karma

Yes. She has a retinal disease, so she's been blind since birth.

Not really. I've really moved in-sync with her. She's my new normal. :)

TheKingBrandonD2 karma

Are you going to attempt to get a correctional surgery as soon as you can?

elepharas4 karma

Nothing such is commonly practiced because what is being researched hasn't completed its clinical trials.

TheKingBrandonD1 karma

If, at any point it does become an option would you immediately try it, or wait to see results from others

elepharas1 karma

That's hard to say. :/

loganchase2 karma

Do you have any family that's going to be really involved in her life such as someone babysitting? and how have they handled it?

elepharas2 karma

Yes. She sees her family quite often. It's been hard for them all, too. You know, in the beginning when we all found out. Everyone just adores her now.

What's interesting is that when I was so caught up in my grief and my suffering, I completely neglected how my family might feel, until one day, my sister-in-law said that she has had to "heal," too. That she also had dreams about what she was going to do with our daughter that had to transform into new ideas and dreams.

ttimebomb2 karma

How blind is your toddler? I know that blindness is usually not complete so im wondering if your kid can still see shades/light $ whatever.

Also check out This optometrist I know says they have cured some young kids from neurological blindness.

elepharas3 karma

She has light perception and seems to be able to see some form or shape of objects, but can only see peripherally (no central vision).

ttimebomb1 karma

Cool. Definitely check those guys out. It means she likely has neurological problem (her brain is injured and is misinterpretting what her eyes see) or the connection from her eyes to her brain is not working properly. In all likelyhood, her eyes function fine.

Try shining a flashlight directly in her eyes and see what kind of response you get. Im no expert but I listened to several lectures and talked to a few people on this topic.

elepharas1 karma

I'm not so sure. Did you see the image I posted in my title? It shows her test results. It appears her retinas aren't functioning correctly.

ttimebomb1 karma

No I hadn't. Maybe I don't understand all this fully. The way it was explained, it sounded like kids with any vision (light/dark whatever) could theorectically have their vision repaired.

Anyway Ill leave it at that.

elepharas1 karma

I don't blame you. The doctors don't understand it all either. Trust me, I know! It's all very very complex!

swimdude21131 karma

How is she with object permanence?

elepharas2 karma

I'm not sure. Her making sense of her world such as in contextual understandings like that, is one of our biggest challenges. She seems to be fairly aware of what is around her, and goes after what is out of her reach, so I'd say she's acquired that knowledge.

TheBobLoblaw_LawBlog1 karma

How does your child see the future?

elepharas2 karma

I don't know that a 17 month-old conceptualizes the future. Hmm ...

brittabots1 karma

I hope you get her into camp when she's older! I've helped blind individuals climb rock walls among a million other things. :)

elepharas2 karma

I'm sure we will, and that she'll be willing. She loves a good thrill!

skrimskram1 karma

I read an article about a bionic eye just a few days ago that has been approved by the FDA. Have you thought about this for your daughter or have any of the doctors recommended it? Is it insanely expensive? Also, question #2: Have you thought about giving your daughter any musical instruments to begin experimenting with?

elepharas1 karma

We've heard about those things, too! This is still all so new to us. We'll see!

And yes, of course! Like all children, she loves music! :)

bradfordtb10151 karma

are you afraid of the questions and hard times he might face? Asking why can't he see you and what not. I mean he doesn't know any different but still

elepharas1 karma

Yes and no. We'll have to take it day by day. I'm also excited for all the things we'll learn together.

Dhelfyre1 karma

Have you ever thought about teaching her sign language too? It could help her understand more of physical space if she can talk with her hands as well as her mouth. Look up ASL (American Sign Language) in your area for any questions.

elepharas2 karma

That's really interesting. I hadn't!

Moonhowler221 karma

Are there any kinds of surgeries that could possibly give your daughter sight? I really doubt there are, but seeing as I've never looked into it, I'm curious.

elepharas1 karma

No, but there are ongoing gene therapy trials for the retinal disease we think she has which has improved vision in several patients. It's not currently practiced though.

Rhodikus0 karma

I hate to be 'that' guy, But can we get some proof? There's been a few AMA's in this subreddit that have turned out to be shams(Not saying yours is, would just like some proof)

elepharas2 karma


elepharas1 karma

I would love to, but what do you suggest? I'm new to Reddit, and I'd like to not reveal my daughter's identity and therefore violate her privacy.

viberight-1 karma

With your child being blind, do you feel depressed?

elepharas2 karma


elepharas2 karma

But she makes me realize how silly that is.