Blindness: Showing Up for Parenthood

Blindness: Showing Up for Parenthood

Braille MonitorMay 2017

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Blindness: Showing Up for Parenthood
by Noel Nightingale
From the Editor: Noel Nightingale is the mother of three children who resides in Seattle, Washington, with her husband Jim Peterson. She first met the Federation when she won a national scholarship in 1991. Her work in the Federation has included service as a chapter president, a state president, and as a member of the national board of directors. By training she is a lawyer who currently works for the United States Department of Education in the Office for Civil Rights. She currently serves as a member of the board of directors of the National Association of Blind Lawyers, a division of the NFB. Here is what she has to say about deciding to become a parent and the challenges it has posed in her life:

Before becoming a mother, I asked an attorney I worked with what was so great about having children. My colleague had often described the inconveniences of parenting. Having children seemed to cause her to create boundaries that made life not as fun, preventing her from engaging in the social life of the law firm because she had to get home. When I asked her why she liked being a mother, if indeed she did, she told me, “When I come home and my kids run to greet me with hugs and kisses, it makes it all worth it.” I thought to myself, “Hmmm, after all you have told me about how your children disrupt your life, the scales seem heavily tipped in favor of non-parenthood.” However, after having had three children, my husband Jim and I now understand what my colleague meant. The rewards of parenthood, though perhaps not easily described, are real.

Becoming a parent was significantly harder than becoming blind. When I became blind, other blind people taught me that I just had to acquire the skills and attitudes I needed to live well as a blind person. I already knew basic life skills as a sighted person, and I merely needed to tweak a few things such as: learning to use a long white cane; learning Braille; learning how to use various assistive technologies; and, hardest of all, truly believing that I could still do the things I wanted to do without limitations. Of course, I now knew about being discriminated against as well.

When Jim and I became parents, our lives changed drastically, and I needed to learn new skills like diapering, nursing, functioning on limited sleep, and getting around with a child connected to me in some way. Bennett Prows, who is a father of three and is blind, told me that when he and his former wife, who is also blind, were expecting their first child, a neighbor came over asking how the two of them were going to take care of a baby. The neighbor expressed skepticism that Ben and his wife would be able to change the baby’s diapers. Ben asked his neighbor what he looks at when taking care of his own toileting needs and that ended the neighbor’s doubt, at least on that particular topic. The basic skills of parenting are not that hard, sighted or blind.

The most dramatic challenge that came with parenthood was that I had to change my perspective and priorities. I realized that neither Jim nor I came first anymore, and I sacrificed many of the things I enjoyed doing to spend time with my children. Like the rewards of having children, it is difficult to describe how the mundane aspects of parenting rule our lives. I trained myself not to use profanity anymore lest I inadvertently do it in front of the kids. Along with Jim, I adjusted my schedule around my children’s schedules, and I learned that my children’s homework was also my homework because if Jim and I didn’t nag the kids to do it or didn’t help, it may very well not get done. The list goes on and on of the seemingly boring yet enormously important and trying things we now spend time on to even reach the low bar of being adequate parents.

Though Jim is our primary stay-at-home parent and all I have to do during most weekdays is earn money, every day I think about all the things going on in my children’s lives. I schedule doctor appointments and activities. I interact with teachers and have served on our elementary school’s Parent Teacher Association board of directors. I feel guilty if I take “me time” when I could be spending time with my children exposing them to something new or just sharing quiet time with them. My motto of parenting is, “It’s quality of time, not quantity of time.” Some of the tasks and trials involved with parenting require the alternative techniques of blindness, but mostly they don’t. For me, similar to becoming blind, becoming a parent involved a mental adjustment to a new way of life. But I have found the adjustment and the sacrifices a lot more daunting than the adjustment to blindness.
All parents I know, both sighted and blind, have similar struggles with parenthood that Jim and I do. They wonder how to properly and successfully discipline their children, debate the question of how much screen time to allow, when or if to buy their children cell phones, and are seeking the right balance between children’s free time and scheduled time. The parents I know are today discussing whether to make their children learn a musical instrument, participate in a sport, or engage in some other kind of skill-building activity, knowing that if they cave in to the child’s resistance, the adult child will turn around tomorrow and tell their parents that they should have made the child stick with the piano or Chinese lessons. Parents are under their children’s microscopes and constantly think about needing to live up to the role models they have envisioned they should be for their children. They wonder how or whether to help their children acquire grit. Parents reflect on how they were raised and whether to follow in their own parents’ footsteps in child rearing. These things and other aspects of parenting are enormously philosophical, and how we meet the challenges of parenthood can determine whether our children’s lives will be as fulfilling as they could be. No parent that I know believes he or she has found the right answers to all of the thorny issues associated with being a parent. Yet, when I tell sighted people that being blind is a lot easier than being a parent, they are invariably skeptical.
Maybe it was because, as I lost my sight, I had a network of supportive blind mentors encircling me. I had blind role models to pattern myself after and quality training from blindness skills and attitude factories of the National Federation of the Blind and the Louisiana Center for the Blind. Consequently my acquisition of blindness skills and my emotional adjustment to blindness were simple and straightforward compared to the adjustment to parenthood. The challenges of parenting make the adjustment to blindness look easy peasy. Of course, I am constantly employing blindness techniques in my parenting, and of course, I never take my blind hat off to be a mom, but most of the time, I don’t think those two aspects of myself interrelate. I just do what anyone does who is trying to live well and do their best for their kids.
I recently read a book by Bill Gates Sr. that has a title that perfectly represents parenting to me, with a one-word change that I don’t think Mr. Gates would mind. Mr. Gates’ book is called, Showing Up For Life. To me, the charge of parenting that sounds easy but isn’t should be called, “Showing Up For Parenthood.” Our kids are not another hobby to be played around with when we feel like it. We must show up twenty-four hours a day, seven days a week, and be at our best. I have many pictures in my mind of my fifteen years of parenting. Leila riding her first tricycle given to her by my mother who was then dying; Cosmo jumping up and down in his crib bawling until he vomited; Dexter, being the social butterfly, and talking to strangers from the time he was a toddler about topics of interest to him like Transformers. Then, of course, there are those moments I won’t get too graphic about but involve fecal matter, an airplane, a crayon, and dental floss. More and more pictures flit through my mind of those very small moments in life unappreciated by anyone but Jim and me, poignant and funny, the type which snatches of memories all parents cherish.
Sometimes Jim, who is sighted, and I have fallen down on the job as parents. When our third child, Dexter, was about three, we noticed that he was telling us virtually every object around him was the color green. We asked his preschool teacher for an assessment of whether he was color blind, and she informally tested him and said that he may not only be color blind but be a very unusual type of color blindness, I think she said blue-yellow color blindness. Jim and I immediately made an appointment with a pediatric ophthalmologist. A couple days before the appointment, we sat down with Dexter and a bunch of Legos and told him what color each block was. Then we asked him what color randomly selected blocks were, and he correctly identified their colors. We took him to the ophthalmologist who said that he is not color blind. It turns out that neither Jim nor I had yet gotten around to teaching Dexter the different colors! Some call that third-child syndrome. With our two older kids, I had taught them the different colors using Braille picture board books but had neglected to do that for Dexter.
An unexpected time when parenthood and blindness starkly coincided in my life was when a parent volunteer was sorting the books in Dexter’s second-grade classroom and found a book published by the National Federation of the Blind. We used to publish a series of books called Kernel Books, a couple of which I had written articles for. The one the volunteer found in my son’s classroom happened to be one of the books I had written an article for and while leafing through it, he found that article and showed it to my son. Dexter came home proud that his mom had written a book, not quite an accurate description of my role in that book, but nevertheless, it created an opportunity for a discussion about blindness. I asked the teacher how the Kernel Book had found its way to her classroom, and she had no idea. To this day, I wonder what the chances are of a Kernel book ending up in one of my children’s classrooms since I had not distributed any of those books to the school, nor, to my knowledge, had anyone else I know.
I have listened to hundreds of books from the library for the blind with each of my children, which I view as a way to spend time with my kids that also expands their worlds and vocabularies. I have now listened to the Harry Potter series more times than I can count and am looking forward to the day someone asks me to enter a Harry Potter trivia contest. Some of my kids’ teachers have told me that the time I have spent listening to books with my kids is evident.
In dealing with homework, I have just required my kids to read it to me when they need help. I figure it doesn’t hurt them to have to do a little more reading, though it is not ideal, especially at times when they don’t read every word on the page to me and then we are both confused. I know that I have a legal right to receive what my kids’ schools provide in Braille or electronic format. I could ask for copies of their homework in an accessible form; but, whether it has been the right decision or not, I have not asked for it to be provided in alternative formats. I don’t want to ask my kids’ teachers to take their limited planning time on creating accessible documents for me if I can avoid doing so. I have usually found a way to help my kids with their homework, by hook or crook.
There have been innumerable times when I felt left out of full participation in my children’s education because I am blind. When I attend meetings at school for parents, any printed material distributed has not once been provided in Braille or any format accessible to me. I have never been asked what format I need to access documents. Because I usually know someone at school meetings, I have been able to ask him or her to read any important materials to me. Jim mostly reads any letters and documents the schools or school district mail to us. He does not, though, read every piece of paper that comes through our door. He is a Type B personality and I am a Type A. I am the one who signs up for the emails from the PTAs and school district and the one who obsesses about attending all the school events we can. However, Jim is my husband, not my reader, so I often have to let my obsessive-compulsive self sit in the backseat and relax about not reading everything that comes home from the schools in our kids’ backpacks.
Jim and I have attended many workshops at my kids’ elementary and middle schools to teach parents how to help their children learn particular skills, usually math. Parents are taught games they can play with their children to increase their math proficiency. Ninety percent of the time, the math games involve print materials. One time I knew in advance that the math games we were going to be taught involved playing cards, I told the school that the workshop leaders could easily purchase a set of Braille playing cards for me to use during the workshop and that they could then have on hand for any blind parents attending their workshops, which the school said would be arranged. I showed up for the workshop held one weeknight in the school cafeteria, and no Braille playing cards had been acquired. So, while the parents all around me played math games with playing cards, I stood there trying to be supportive of my son but feeling inadequate. While these times have bothered me enormously, they are usually isolated incidents, and I have moved on. We believe that our kids are receiving a good education, have had excellent teachers, and nothing until recently has dramatically gone wrong because I could not access information provided by one of my kids’ schools.
Well, “until recently” is not quite accurate. Five years ago, during summer 2012, our school district changed websites. Until then, I had been able to obtain much of the information I needed from the school district’s website; that is, I had been able to obtain any information available to all parents on the website. The new website, however, was extraordinarily inaccessible. I couldn’t believe it. The majority of the links on the homepage didn’t open when I entered on them. Apparently, something happened on the screen, but my screen reader didn’t know it. The school district calendar of events—like days that school was not in session—was in an inaccessible table, so when I try to figure out significant events happening during the school year, my screen reader just told me the dates of the month with no information about what was occurring on those dates. When I saw that the website was horribly inaccessible, I wrote to the school district’s webmaster. For the past four years, the webmaster has provided me with some of the information I sought but could not access on the website. Of course, this is not a good situation because the webmaster is not around at all times of the day and on all days of the week when I am looking for information. Also, the webmaster cannot browse the website for me, she can only respond to my specific information needs if my needs can wait until she is available. However, because the school district seemed to understand the problem and seemed to be willing to fix it, I patiently waited for the fix to come.
My patience came to a full stop when Cosmo was in fifth grade. I received an email from Cosmo’s teacher. All year, he had had math homework using an online program called ST Math. Every weeknight, Cosmo would get on our computer and, we thought, diligently work on his ST Math homework. Not so. The teacher’s email to me said that Cosmo was less than 40 percent complete with his ST Math problems, and he was supposed to be at 80 percent at that point and 100 percent by the end of the school year. Jim and I quickly figured out that Cosmo had probably not resisted the temptations offered by a computer, and instead of doing his math homework had been playing Minecraft (a video game) or watching YouTube videos. Cosmo vehemently denied it but could not explain why his classmates were able to be at 80 percent complete and he less than half that. Jim and I concluded that we needed to institute an accountability system for Cosmo and monitor his progress on ST Math so he could catch up to where he was supposed to be. I went to the computer to have Cosmo show me how to log into the program so I could see what percentage he started at and then come back after an hour and see what percentage he had achieved by then.
I got my first inkling that my ability to monitor Cosmo’s ST Math progress was not going to be as easy as I thought when Cosmo said that the log-in was to click on a series of pictures. Not just one or two unlabeled graphic pictures but many unlabeled pictures. I had him login, then I went to find the part of the program that says what percentage he was at, and all I heard was “Flash, Flash, Flash, Flash, Flash…” The whole program was inaccessible. Now the school district’s failure to ensure it is purchasing accessible technology was not only a significant accessibility problem for me in locating information on its website, but it was actually blocking my ability to monitor my son’s homework progress. Now I was angry.
Enter the National Federation of the Blind. My touchstone. My source of inspiration. The members of the NFB have always reinforced to me the importance of parents’ full participation in children’s education. I had put up with inaccessible documents for umpteen years and found ways around the problem. This time, there was no way around the inaccessible technology. Technology is either accessible or it isn’t, and unless I have a reader sitting on my shoulder every time I want or need to use a website or a piece of software, it must be accessible out of the box. A public school district has a legal responsibility to make sure that its programs are accessible, and apparently our school district hadn’t been taking that obligation seriously. So, with the NFB’s help, I filed a lawsuit in federal district court. I had the dream team of lawyers, one of whom admits he was put to the test by Dr. Jernigan and Dr. Maurer and somehow made it through the trial. That is Dan Goldstein. Through the lawsuit, I secured a commitment from the school district to create a system whereby it ensures the technology it purchases or uses is accessible from the get-go.
Thanks to those who continue the self-help movement founded by blind men and women in 1940, the National Federation of the Blind, we have the gift to learn from and lean on one another as we live full lives as blind people. I suppose there are organizations of parents who provide support for each other, but they don’t and probably can’t function in parents’ lives the way the NFB does for me. My thanks to the organized blind movement that has given me a full life of working full time in a rewarding job and allowed me the freedom to choose the twenty-four/seven job of parenthood.

Leave a Legacy
For more than seventy-five years the National Federation of the Blind has worked to transform the dreams of hundreds of thousands of blind people into reality, and with your support we will continue to do so for decades to come. We sincerely hope you will plan to be a part of our enduring movement by adding the National Federation of the Blind as a partial beneficiary in your will. A gift to the National Federation of the Blind in your will is more than just a charitable, tax-deductible donation. It is a way to join in the work to help blind people live the lives we want that leaves a lasting imprint on the lives of thousands of blind children and adults.
With your help, the NFB will continue to:

Give blind children the gift of literacy through Braille;
Promote the independent travel of the blind by providing free, long white canes to blind people in need;
Develop dynamic educational projects and programs that show blind youth that science and math are within their reach;
Deliver hundreds of accessible newspapers and magazines to provide blind people the essential information necessary to be actively involved in their communities;
Offer aids and appliances that help seniors losing vision maintain their independence; and
Fund scholarship programs so that blind people can achieve their dreams.

Plan to Leave a Legacy
Creating a will gives you the final say in what happens to your possessions and is the only way to be sure that your remaining assets are distributed according to your passions and beliefs. Many people fear creating a will or believe it’s not necessary until they are much older. Others think that it’s expensive and confusing. However, it is one of the most important things you will do, and with new online legal programs it is easier and cheaper than ever before. If you do decide to create or revise your will, consider the National Federation of the Blind as a partial beneficiary. Visit https://nfb.org/planned-giving or call (410) 659-9314, extension 2422, for more information. Together with love, hope, determination, and your support, we will continue to transform dreams into reality.

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