Posted in Public Attitudes, Misconceptions, and Advocacy

Babies’ Births and Blindness

2016-08-09-19-23-17Well, in the event that you really enjoy reading this blog and have missed posts, I have a really good reason for not posting in a while. WE have been busy with a newborn and in the thick of adjusting to the “new normal” of life with three children, one of whom also started Kindergarten this year–a whole other blog post.  Three months later, I’m finally feeling like I’m starting to come up for air and mastering our “new normal” routine.

We welcomed our third child, Brayden Alexander Hartle on Tuesday, August 9. He weighed in at 9.93 lbs. and was somewhere between 20-23 inches long , beating out his two older sibs by a few ounces–yes, we make really big, but long and skinny babies.  He is quite the little cutie and we’re so happy to have him join our family.

I ended up having a scheduled C-section with him. This was my third C-section. Our first child was brow presenting, instead of crowning, so after about 20 hours of being induced and in labor, her delivery resulted in a C-section. . When our second child came along, he was breech at one point and estimated to be somewhere between nine and ten pounds, so we ruled out a potential “trial of labor after cesarean” due to possible risk for complications because of his size. By the time this little one came around, I pretty much didn’t have any choice but to have another C-section. IN any case, I guess it really doesn’t matter how they get here, just that they do and that they are healthy. We’ve been so blessed each time.

One advantage to knowing when you’re going to deliver is that it allows you to plan a bit better. Since Jesse and I can’t drive, this gives us a little bit of relief to know that the possibility for making a 2 a.m. Uber ride to the hospital is low. I’m sure our friends who are on the emergency call list appreciate it too.

We have delivered all three children at the University Of Maryland Medical Center, in the exact same O.R. even (wish I’d thought to get a picture of myself standing outside the room prior to this last delivery for sentimental purposes. Each experience has been positive. Given that the focus of this blog is on blind parenting issues, I thought I’d take a few minutes to share some related thoughts with respect to our deliveries and our blindness because there is always a little bit of apprehension in the back of our minds about what our experience will be like. Blindness always comes into play in some form or fashion.

Prior to our first child’s birth in 2011, we were pretty nervous about what our experience would be. We’d heard some negative things from blind friends. At that time, there was also a custody case going on in Missouri where a baby had been removed from the custody of her two blind parents shortly after being born, purely on the fact that a hospital social worker expressed some concern about the parents’ abilities. (Just as an added note, at that time here in the state of Maryland, it was also legal for children to be removed from a parents’ custody purely on the basis that the parent was blind with no need for evidence of harm or risk to the child( Since 2011, state legislation has been enacted that prevents this . I wrote a testimonial for a state congressional hearing which you can read here.) Delivering a baby is scary enough without bringing all these other fears into the mix.   So, we tried to be proactive. We spent a bit of time working with our doctor and even spoke to the head nurse of the Labor and delivery unit prior to our daughter’s birth to help dispel some misconceptions and hopefully make our experience a positive one. I am grateful to report that each have been. I think our own ability to advocate for ourselves, our skills training, and demonstration of our abilities have been the prevailing factors in making this so. I also need to give credit to the advocacy of our doctor. We’ve been so blessed to have a great doctor who has followed all three pregnancies and who has become like a part of our family. If you’ll indulge me for a moment, I’d just like to say that finding this doctor has been like an answer to prayers. Bringing a child into the world is such a scary, challenging, exciting, emotional, intimate experience and I’m so grateful that we’ve been able to work with her. She originally started out as just my regular physician about ten years ago, but because she is a family medicine doctor, she’s now become Jesse’s doctor and our pediatrician. She’s also been able to follow all my pregnancies, was present for each birth to support me—even rearranging her schedule just for us–, and she would have delivered each child had I not had C-sections. So we really feel like she knows our family and is our #1 supporter.

Each delivery, we’ve ended up staying in the hospital for an average of about four days (the protocol for a C-section is two or three, but we have stayed longer because our children all had Jaundice . Typically, medical professionals’ views or training when it comes to blindness are more focused on how to correct the problem rather than looking forward to how one would live successfully with it, so this allows us a lot of opportunities to help educate others on the capabilities of blind people. I’ll admit, each time we’ve felt a little bit like we were under a magnifying glass. Despite this, it’s still been a great opportunity for us and felt a bit like a public education mission in that we can demonstrate the capabilities of blind individuals. We’ve been asked a lot of questions about how we do certain things; i.e., how do you get around, how do you change a diaper, how do you keep track of your children, how will you deal with car seats, etc. We’ve been able to share some of our methods and talk about the kind of training available to those with vision loss that helps us with everyday life. We get told that we’re “amazing” or “inspiring” most of the time, which is nice to hear, but truthfully, we just want to help raise public expectations on the abilities of blind people to live normal lives, including having and raising a family.

We did have a bit of an issue this last time with one of our nurses which I want to share. I felt a bit uncomfortable with her because of the way she doubted my abilities by questioning some of my actions. For example, she didn’t want me to pick up the baby from the bassinet because she was afraid I would drop him. Instead, she wanted me to page her to get him. At first, her concern seemed slightly relevant, but I assured her that my husband (who was asleep in the chair next to me) was staying with me and could help with this. She continued to seem uncomfortable with this and I finally realized from her questions that she was concerned about the safety of the baby with both of us being blind, and our ability to locate the baby and the bassinet. I began to feel a bit irritated partly because it was late and I was physically uncomfortable, but mainly because I felt like I had to defend myself to her. I finally had to explain to her that I had enough vision to locate the bassinet and agree to call her if I needed help. I felt annoyed that it took me reassuring her that I had enough vision to see the baby in the bassinet because it felt like throwing my very capable, but practically totally blind husband under the bus. Let me assure you that it’s not too difficult to feel where a large object placed next to your bed is, nor is it hard to locate a crying baby. And if you’re worried about misjudging the placement of the baby back into the bassinet without vision, I can testify that natural instincts will kick in and you won’t release the baby until both of your supporting hands feel a flat surface under the baby…at least in my experience.

We had one or two other little misunderstandings from her and asked our doctor if there was a way to request that she not be assigned as our nurse again. . We’re generally pretty easy going and not confrontational, but she made both Jesse and I feel uncomfortable. Anyway, the story has a happy ending. Towards the end of her shift, she started talking to us and asking us some questions and seemed to begin to change her perception. In fact, the next night she came into our room and told us that she was not assigned to us that evening but wanted to say hi. (We honestly don’t know if this was coincidence or arranged), and she told us that she really appreciated the opportunity to meet us and admired us for what we were doing. It just goes to show you that actions speak louder than words, and that people’s perceptions can be changed.

So, there you have it…a brief glimpse into our birth experiences. We are so grateful for the privilege of being parents. It is honestly the most challenging, sleep-depriving, stressful experience ever, but the most joyous and worth every moment. Thanks for reading.

 

Posted in Blindness Skills, Uncategorized

When Santa Lost His Eyesight

When I attended the Louisiana Center for the Blind in Ruston, LA, (the best blindness training center in the country in my humble opinion) I remember seeing a presentation of a short humourous play at one of our Christmas parties there in which Santa goes blind and comes to the LCB for training. I’d forgotten about it until I saw this post in a blog written by a friend of mine. I thought this was a fun read and have reposted it here for you. Some of your blind children out there might enjoy hearing about a Santa with whom they can identify. Just to give you a little background, the original play about Santa losing his eyesight was written by Jerry Whittle, the former Braille teacher at the LCB. Mr. Whittle is known for his plays in which he always shares some kind of story of an individual’s journey to overcome his/her blindness through training and gaining of a positive attitude towards blindness. These plays are usually performed at local and national conventions of the National Federation of the Blind. This post came from a post in the blog “Slate and Stylish”,found on blogspot, and one of my favorite blogs I follow which is written by a friend of mine, Deja Powell. I hope she won’t mind me sharing this. I hope you enjoy reading it too and that it brings you a little Christmas joy.

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Posted: 18 Dec 2012 10:03 AM PST

*This is a cute little story written by my good friend Alex Castillo adapted froma play from one of my heroes, Jerry Whittle. Enjoy!

When Santa Lost His Eyesight

Santa winking/

By: Alex Castillo

Most people know about Santa Claus. He’s the Jolly old fellow who along with a team of flying reindeer and tireless elves, work year round so that on one night out of every year, they can bring presents to children and adults all over the world. What many people are not aware of, is that one year, Santa began noticing that his vision was not what it used to be. Of course, he did not want to admit it to himself, but driving that sleigh at night, and being up there in the sky with all of those airplanes zooming by, made him feel quite unsafe.

It was no surprise when news started being gossiped about in the North Pole that Santa had gone blind, and that he was quitting the holidays. He became depressed, and without his work, he lost his sense of purpose in life. The man was a real sad mess. On one of those special Holiday nights, everything started going downhill and Just got worse and worse. The naughty and good lists were becoming a blur, and he handed out the wrong toys to more than 1 billion people. I know what you might be thinking at this moment, If Santa had gone blind, you would have surely heard about it. I’m not saying this is all true, but was there one year in which you received absolutely the most unlikely gift ever? Well, if the answer is yes, then this story might make a little sense.

After getting home that night, Santa could do little more than lock himself up in his office at the toy factory, and no matter how hard anyone tried to cheer him up, he could do absolutely nothing for a very long time. This is the story I heard last year when I was visiting friends in Ruston, Louisiana. They say that one year after he had lost his vision; Santa came down there to receive training at their blindness center. “He could barely even see Rudolph’s nose,” they said, “He had lost about 75 pounds when he had first arrived, and wouldn’t even touch a cookie.” “he’d get real close to ya when he was talking,” they would all whisper, “Couldn’t tell north from south even if he was holding a compass: bless his heart.” And apparently the entire town knew about this phenomenon. So well-known was the story down there that a writer by the name of Jerry Whittle wrote a play about the whole ordeal, and everyone in town came to see the production.

When I asked how come Santa didn’t choose Nebraska to come and train, after all, we have an awesome center right here, and it would seem the familiar choice with all the snow we get, howling winds, and freezing weather, the answer I received was: “well, Nebraska? With all that snow up there? He’d be recognized in a heartbeat if he stepped outside dressed in all red in his Husker gear. “They said: “Down here, he’s just another blind guy with a beard.” The more I thought about the story, about this blind and depressed Santa Claus, the more sense it made. Often when people start to lose their eyesight, they feel ashamed, and even worthless. People find themselves almost transforming from a productive and contributing member of their family, or community, to just sitting passively, watching life and everyone else pass them by.

We often confuse the inability to do, with the inability to see. And all that it would take for us to get back into our routine, or even find a more exciting and challenging one is to simply understand that with some blindness training, many doors can open up with the promise of opportunity. Training centers do not create Santa Claus’s. But they can help Santa figure out how he can do his job as a respectable blind person non-visually. As I recall, the play ended with Santa making the decision to keep the toy factories open and to stay in the Job as Santa Claus, and arriving at the North Pole to continue his yearly duties, with some new blindness skills and alternatives. It was a true happy ending. But the people in Ruston tell a different story. They say that he didn’t go back to the North Pole right away. “Oh, he had some trouble with the training,” they said. At first, he was always lifting those sleep shades. They said he would use the excuse of being overheated to lift them and peek during every class. He didn’t like travel very much, they said: “Oh, Santa, Santa, you would see him just hiding when it was time for travel class,” But what surprised me the most was when they told me: “the first time Santa stepped into the wood shop and heard those live blades running, he almost fainted.”

One would think that someone who has been working with factory machinery their whole lives would be able to handle an arm saw. As time went by, he settled into the center and became an excellent student. But, after training, he didn’t go back to the North Pole right away. He wanted to try out a new career. He went to work at this Cajun restaurant as a cook in the next town. During training, Santa had discovered that he had let Mrs. Claus do all the cooking their entire marriage, but he actually enjoyed working in the kitchen. “Could you imagine that?” they said, “Santa as a cook in a Cajun restaurant?” I suppose he just felt like he wanted some independence.

Like many people after they finish blindness training, he must have felt a bit rebellious and must have wanted to prove to anyone that he could go far beyond the common expectations for a blind person. It wasn’t until the Mrs. Threatened to come and get him that he decided to go back up north. Sometimes the path to independence isn’t obvious and clear. Sometimes, like Santa, we need to figure ourselves out for a little while. Sometimes, blindness gives us an opportunity to learn and make decisions which vary greatly from our past, and that we would have never thought possible if we had not lost our eyesight. And sometimes, we just get a stronger sense of who we are.

But, The first step toward independence, and starting your life, or getting it back is recognizing when it’s time to receive training, and then going through that training in a program that will allow you to fully realize yourself as a respectable blind person. After all, this is our life, and we live through our choices. As for Santa, You can decide to believe this story or not, but the children and grownups are still receiving presents on time and without any strange mix-ups. Polls show that he’s been doing a better job year after year. And just the other day, I read a review about some new restaurant opening up on the North Pole which specializes in southern cuisine. Note:

This Story was based on the play written by Jerry Whittle.

Link: http://nebraskacenterfortheblind.blogspot.com/2012/12/blind-santa-goes-back-to-work.html

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