Tag: Advocacy

Public Attitudes, Misconceptions, and Advocacy

Babies’ Births and Blindness

Mary Jo Hartle

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.

 

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Pioneers on the Playground

Mary Jo Hartle

As most of you know, I am a native Utahan. I love my home state and miss it often—especially at times like these. July 24 is known back home as “Pioneer Day” and is the anniversary of the day when the original Mormon pioneers first entered the Salt Lake Valley in 1847 after months of an arduous journey pulling handcarts and wagon teams across the frontier. I am an original descendent of Mormon Pioneers who left their homeland and migrated to unknown territory in the west in search of religious freedom and better opportunities. I cherish this heritage and am proud of my ancestors for their sacrifices and great examples.

Outside of Utah, members of the LDS church often commemorate this anniversary by celebrating the “pioneer spirit” exemplified in our members who have sacrificed or been modern day pioneers in other ways for their religious choices. As I have been reflecting this week on “pioneer spirit”, I had an idea to write a post to honor the lives of a couple pioneers in the field of blindness whose influence and hard work has made an impression on me and the lives of many blind and low vision individuals.

The first pioneer I’d like to recognize is Louis Braille. Of course, this may seem like an obvious choice and he’s probably one of the first “pioneers” you’d think of with respect to blindness. I am very appreciative of his creative mind and diligence in creating what we know today as the Braille code. Louis Braille definitely faced his own share of nay Sayers and doubters. Braille (the medium) has opened up so many opportunities to me with respect to literacy. I drug my feet for a long time in learning it, and will admit I’m not the fastest or best Braille reader, but I’m grateful for this method which opened up the world of literacy to me again in new ways . Yes, I may be able to read very, very large print, use magnification, or even audio sources for reading, but there is truly a different part of your brain which is engaged when you are engaging in “active” reading and taking the words on the page and interpreting them yourself. I love the ability to be able to read aloud to my daughter from a Twin Vision book in Braille, or be able to write notes for a presentation. I also love that Braille allows my husband to read aloud to us when we read our scriptures as a family, or that I can go to a meeting and read an agenda along side my sighted peers. Thank you Louis Braille.

The second pioneer I’ve chosen is Jacobus tembroek. This is probably a lesser known individual to most, but I chose him for his work in orchestrating the first organized blind movement. Whether you’re a member of the National Federation of the Blind (NFB), American Council of the Blind(ACB), any other blindness group, or none at all, your life as a blind or low vision person has been impacted in some way or another by advocacy work of blindness organizations. temBroek’s work as the founder of the NFB in 1940 blazed the trail for advocacy for and by the blind. We as blind people today enjoy many more rights and civil liberties as result of organized blindness groups. For example, the right to carry a cane, better employment opportunities through anti-discrimination laws, access to educational opportunities, and so much more.

Lastly, I’ve chosen Joann Wilson, the founder of the LouisianaCenter for the Blind. Her influence may not be as far reaching or broadly known as the former two individuals; nevertheless, it has had quite an impact on the lives of hundreds of blind individuals and innumerable ripple effects. Wilson founded the LCB in 1985 as a rehabilitation and training center for blind and low vision individuals. Her center was based on the model of training used by Kenneth Jernigan (another pioneer in the field of blindness in his own right) originally at the Iowa Commission for the Blind in the sixties and seventies. The style of training and methods implemented at the LCB was vastly different from conventional training methods used in traditional rehabilitation programs at that time. Because of its high expectations, structured discovery learning methods, and philosophy based on empowerment and independence, the LCB has flourished over the years to become one of the top , if not the top training and rehabilitation center in the country with alumni from across the country and other countries . Many state and private training agencies around the country model their training practices after the practices of the LCB, even sending instructors there for professional development and training. The LCB also established a partnership with Louisiana Tech University under Wilson’s guidance and now has several teacher training programs which help train orientation and mobility specialists and teachers of the blind in the philosophy modeled at the LCB. I too am a graduate of the LCB and of the teacher programs at LTU and have a strong testimony of the practices used there to teach blindness skills. This model truly surpasses conventional approaches to training in blindness skills. I could go on for hours pointing out the differences, and giving examples of individuals who initially received conventional training, but whose lives and abilities were changed by the training they received afterward from the LCB. I know personally the confidence and empowerment this model of training can have on the lives of someone who is blind or low vision. Mrs. Wilson’s work continues on through the actions and examples of all those who pass through the doors of this center. Thank you Joanne Wilson for your hard work and dedication in establishing this center.

I know there are dozens of other individuals about whom I could go on who have exemplified a unique “pioneer spirit” that has greatly impacted the lives of many blind and low vision individuals. I hope this pioneer day you will join me in honoring the pioneers in our lives who have blazed trails, overcome adversity, and who have made sacrifices to improve the quality of life for those with vision loss. Whether it be developing new technologies , breaking ground in new arenas where the blind have not been before, , or leading by example, I am grateful to these individuals for their time, talent, and confidence in the abilities of the blintwin vision books,teacher of blind students trainingd.

I’d love to hear whom you would recognize as an individual who demonstrates the “pioneer spirit.” Please leave a comment with your picks and reasons why.

Happy Pioneer Day!

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Using Our Voices

Mary Jo Hartle

A few months ago I became acquainted with an organization called “The Power of Moms. The organization’s mission is to help encourage what they refer to as “deliberate mothering.” In any case, I’ve found it to be a great resource, and truth be told, have become a little obsessed with it. But that’s a story for another day. . The organization also produces podcasts of which I’ve also become a fan. I recently listened to one which I think is a great one to pass along to parents of blind children. It is entitled, “Using Our Voices.” (Episode 45.)

In this podcast, one of the organization’s co-founders is interviewing a mother of a child with spinabiffita. The message of the program however is not really about caring for, or being a parent of a child with spinabiffita, but about how this mother learned to use her voice to advocate for the needs of her daughter. I strongly recommend that those of you reading this post as a parent of a blind child go and listen to this podcast.

Often I come across parents like this mother who don’t know or believe that they have a voice when it comes to advocating for the needs of their blind or low vision child. Many have experiences where they ignore their “gut” instincts as to what their child needs because they are intimidated by “the professionals” in both academic and medical realms. Others find their suggestions or beliefs as to what might be best for their child dismissed as “not a best practice” or “not deemed appropriate” for the child. For example, this past fall I completed and Orientation and Mobility assessment for a kindergartener. His parents strongly felt that he would benefit from using a cane and having more cane travel instruction than what he was presently receiving. (He saw his O and M instructor for a half hour a month despite the fact that he is documented as being legally blind and has a doctor’s report in his file stating that his vision is degenerative and expected to be completely gone within six months.). The parents were concerned because his vision was worsening and he was extremely fearful of traveling in unfamiliar areas. Unfortunately, the school administrators and his O and M professional did not see any reason for him to have a cane or to receive additional services because of the level of vision he presently displayed. Needless to say, these parents felt like they had no voice and continually saw their young child struggling. Their gut instinct was that things needed to change. Fortunately for them, they became connected with individuals who validated these feelings and helped them find their own voice for their child.

Our blind and low vision children have the same rights, opportunities, and potential as their sighted peers. They need only to be given the experiences and opportunities they need. I especially liked how this mother pointed this fact out in this podcast with respect to her own daughter’s potential. I think this is an important lesson for our parents of blind and low vision children to hear. Just because our children can’t see as well as other children does not make them inferior, unintelligent, or incapable.

I could spend hours sharing similar stories and write pages on how parents are the best advocates for their children. But, it all comes down to the fact that you have your child’s best interest at heart and you know your child and his needs better than anyone else. You and your child have rights. I think hearing this from another parent is one of the best ways to help convey this message. I hope you will check out this podcast and that it will inspire you to go out there and find your own voice when it comes to advocating for your child. WE need more parents of blind and low vision children out there to speak up for what is best for our children. Good luck!