elepharas

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!

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

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! :)

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.

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.