Blind

December 10, 2015 congenital blindness, December 2015 Feature - Sensory, Katie, Sensory System, septo optic dysplasia, vision loss 10 Comments

Fear. I can see it in the eyes of everyone who asks the question, “Can they see anything?”

Then I see the frozen look of shock when I say, “Nope, not a thing, and they never will.”

I see the hundred questions that they are afraid to ask.


blind


Ten months ago I did something everyone considered crazy. Our family adopted two girls who were born without eyes. Two at once. All kinds of crazy up in here. They are not visually impaired, they are blind, completely, 100% without vision. We had little experience with the world of the blind. A taste here and there but not much to go on except that we were going to steadfastly bring them home and make them ours. One step, one day at a time we would figure this out because we were sure of one thing. They were worthy.

We walk down the mall with our herd of six children, one with a pusher/pre-cane made from pvc pipes and one with a grocery cart as her pre-cane. And heads whip sideways to watch us as we go. Occasionally, this annoys me because I am such an introvert and would love to just fade into the background, but I knew when we did this we would never fade anywhere. We were practically begging for the spotlight regardless of how much we didn’t want it. And that world, with the spotlight, thinks that being blind is a fearful thing.

Did you know that Helen Keller was once asked which she would choose, deaf or blind? She chose being blind above being deaf. She above everyone else knew the cost of each loss and would prefer to be blind if she had a choice. Her answer to why was that being blinds cuts you off from things, but being deaf cuts you off from people. You could be in a room of people talking and have no idea unless you are facing them. In our family experience we have found this to be true. It is things that we have had to introduce to our daughters. They prefer to have people and have little to no concept of the point of a toy.


What to expect…

The unexpected.

Ha. No, but really when adopting a child with visual impairments or one who is completely blind so much will depend on what they were introduced to in their time before you. I have seen videos of some of these children with skills with a cane already. Amazing! My girls were probably worst case scenario, terribly neglected and without skill at all.

You do not need to rearrange your house.

I worried that our house would be the worst place for them because we already had four young children and frankly, it is always a mess. I confess to toys everywhere, as I hang my head in Pinterest Shame. I also have a very bad habit of rearranging furniture all the time. What can I say? I get bored. I try not to rearrange very often now. When I do, I just take the girls for a tour of the new layout, and then they know it. We put a gate on our stairs, and that was the only change we made.

They will get around the house just like the rest of your children.

In familiar places they don’t usually use canes. They just walk around, jump, skip, like the rest of the kids. It is a very rare occasion that they bump into something.

Chances are high that their verbal skills will fall behind their peers.

Well, if you couldn’t see someone else’s lips moving how would you figure out how to speak? It just takes longer. I had one come home completely nonverbal and one who was stuck in echolalia (repeating others words/sounds) land. They are both progressing at their own pace.

Fear of new places.

This has been a learning curve for us. We go places. Our children are involved in sports, we attend church, we like to visit people. Each new place is an unknown. For our girls the unknown is very scary. They have no map or layout of the place in their head. The variables are infinite. Church was a nightmare, so many people all around, so many sounds, chairs everywhere. Yikes. Over time and with repetition these places are not as fearful to them. I think it may be because of this that each girl is superb at listening to our warning voice of “Stop!”

Your house will be a mess.

Sorry. It will. The amount of times I clean food off the floor is just not right. I’m sure as they learn new skills this will diminish. Someone, please say that it will. Cause my poor, sweet, perfectionistic husband is dying a slow and painful death.

Reality.

Has this turned our world upside down? No, not really. Adoption does that all on its own. I don’t think the blind card threw in that much of a difference. In fact, most days I forget that they can’t see. I find myself doing things like telling one of the other kids not to turn off the lights in the bedroom because one of the girls is in there. And then I remember…they are blind. I laugh at myself a lot these days.

Humor.

I am delighted to report that this community seems to have an excellent sense of humor. I find that they are not the overly sensitive group that demands you never joke about this. Most often they are the culprits of the jokes themselves. Phew. Because occasionally my sense of humor gets a little wacky.

You will be asked all kinds of ridiculous questions. Some of my favorite are these:

“Will they grow eyes eventually?” Huh?
“So, can they see shadows?” No, blind. Got nothing here.
“Will they see someday?” Y’all, I really have to up my poker face game.
“This is so sad! How do you deal with this?” I tell them they rock and move on.
“Will it calm them down to turn the lights off?” Uh, nope, not gonna help here. But thank you!
“So, how much can they see?” Hi. It’s me again. They have emptiness going on in the eye socket area. Zilch. Nada. Nope, still got nothing.

My favorite ever. “Will prosthetics help them see?” No words, Friends, just giggles. I can’t even.


Lessons for you…

You should make yourself comfortable with the terms; Orientation and Mobility, Braille, Echolalia, Sighted Guide. Wonder Baby is an excellent website for ideas and learning. Pinterest is your new best friend.

Each Visual Impairment has its own umbrella of conditions it may be connected to or it may stand alone. But we often don’t have that information given to us in files we review, so be aware that there may be conditions along with that impairment. One of our daughters also has Septo Optic Dysplasia and that comes with its own set of challenges. Just be aware and have a great pediatrician on board to screen in many areas.

What I would say you should never do is limit them with expectations. That’s my one rule for you. You have no idea what they are capable of and you will spend the rest of your life watching them grow and learn and do new things. They are brave souls who will resent being limited. The world assumes they can do nothing because they cannot imagine doing it without sight. But they simply can. My daughter went roller skating yesterday, a friend has her daughter is a soccer league, another friend has a son who runs marathons. Bike riding is often a favorite pastime.

Stop believing that things are impossible for the blind community. The sky is the limit. Please tell that to them every day. Remind them that the world is amazing and huge and if they want to try something crazy like climbing a tree, stand by for your own comfort (cause they sure don’t need it), and let them climb. Someday they will walk down a street in a big city and cross the street with nothing but a cane. It’s our job to teach them how, to believe that they can, and to sit on our hands when we want to stop them.

There are so many things I want to tell you about this amazing community and its resources and its members. It’s really exciting and there are so many things out there to help our children succeed. But this is a blog post and not a book, so feel free to find me, email me, message me on facebook for more information if you want it.



10 responses to “Blind”

  1. This is so incredibly touching and real, Katie. Thank you for this!

  2. Khristine says:

    Hi, loved your piece. I love that you talk about having to sit on your hands and let your girls get on with life, so I thought I’d share this story.
    Many years ago I met a lovely remarkable man who was a lawyer working in the discrimination area. Later he became the Australian Anti-Discrimination Commissioner! Why was this man so qualified for the role? He was born totally blind. He told me that his parents never made any exception for his disability. He left home and went to University the same as any other young person. He did meet hurdles in getting employers to believe in his abilities but when the chance was offered his career took off. His name is Graeme Innes.

  3. Heidi says:

    This is such a wonderful piece! Its commentary on the public is a bit scary though; the questions about them regaining their sight are pretty clueless. The thing about your girls is that this is THEIR normal. They don’t know what they are missing. Life, at least the sensory portion, it’s just what it’s always been. As scary as it is to a sighted person to see a blind person navigating traffic, it is no different to them then my using visual cues. It’s the way we each learned. You’re an amazing family to give these girls a chance to enjoy life in a loving family.

  4. Sandy says:

    Excellent introduction to adopting a child with visual impairments! I would add that there are oodles of resources and we have met many blind adults who are eager to mentor blind children – sharing the frustrations of interacting with clueless sighted folks and the rewards of dreaming big and not allowing low expectations of others hold them back.

    • Katie says:

      I was really holding back on all the resources I wanted to throw in here. Oodles and oodles that I didn’t know before I brought the girls home. I remember being overwhelmed by all of them and not knowing where to start.

      • Michelle says:

        I would love to hear about your resources. I’m in the process of adopting a 15-month-old girl who is blind, so I’d love to learn more.

  5. Julie says:

    As another Mom of a child with zero vision I love this. I rely on humour all the time, make mistakes and recover constantly! These kids aren’t scary they get scared. They’re not dim they shine brilliantly if you just let them. The rest of the world will catch on, eventually…..

  6. Kelli Smith says:

    Thank you so much for sharing this. We are about to venture into this new special need. I am excited but a bit scared of the unknowns.

  7. Anjelina says:

    Thank you for giving these two lovely little ones a warm supportive accepting family. As a totally blind adult, if you ever need a mentor or friend, I’m here. 🙂

  8. Velleta says:

    Excellent article! We have 4 blind children from China. They run cross-country and track, play in their school marching band, ride horses at full gallop, garden, swim, hike, read braille voraciously, cook supper, and bake bread well enough to win blue ribbons at the county fair. The only thing they can’t do is drive. And my house is a mess too.

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