American Action Fund for Blind Children and Adults
Future Reflections
       Special Issue: Early Childhood      FEATURE

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Words of Wisdom

Compiled by Krystal Guillory
Reprinted from https://uniqueunderstanding.wordpress.com/author/krystalguillory

Krystal GuilloryFrom the Editor: Krystal Guillory is a teacher of blind and visually-impaired children in Louisiana. In her blog posts she shares her thoughts about teaching, blindness, and life.

I've talked with a number of parents of blind children and adults, and they always say that they want to hear from other parents of blind children. I try to offer advice, wisdom, and support, but I realize that it's just not the same coming from a teacher. I was inspired to create a post with words from parents of blind children.

I asked one question of each parent: What is the one thing you would want to tell your past self about having a blind child? (It can be something you wish you could say when you first discovered your child's blindness or at any time along the journey.) Here are some of the gems of wisdom I received.

Ruby Guillory (mother of Eric): I wish I would have tried to learn Braille.

Mitch Guillory (father of Eric): Nothing. I always said I would raise him as a normal kid, and we did.

Lindsay Sanderlin (mother of Jordan): I would tell my past self not to fear the unknown, but embrace it. It has been the most amazing, beautiful experience being the parent of a blind child. Fear holds you captive. Acceptance is key and teaches the child to be free.

Carla Anderson (mother of Isaiah): That it's not the end of the world. Keep the faith and be strong for your child and yourself. Your child needs his mother 100 percent strong for him. When you see everything pull together and work out somehow is when you know everything will be okay.

Frances Hammond (mother of Ari): When Ari was first diagnosed I wasn't sure about a lot of things. I'd like to be able to tell my nineteen-year-old self that everything is going to be okay and not to hold her back from ANYTHING, including trying different kinds of food and outdoor activities. I'd also like to have known how important her cane is. She didn't use it consistently until she was about seven. I wish she could've had and used a cane from the time she was diagnosed at six months old.

Diane Powell (mother of Deja): I would have been much more aggressive to fight for my daughters to learn cane travel and Braille. I do not feel that what was offered to them through the public school system was near enough. It was my job as a parent to fight for more. If I could go back, I definitely would have done that!!

Lauren Thompson (mother of Jada): I would tell my past self, don't be fearful. Human beings have the remarkable ability to adapt to their situations in an extraordinary way. In many ways, my child can do more than a child without vision problems. She is as handicapped as I let her be. Do not hold her back. Let her find her own way to do things. "Normal" is just a setting on the washing machine. This isn't the end of her world, but the beginning of your enlightened understanding.

Beth Freeborn (mother of Harley): I would say that raising a blind child is not that different from raising a sighted child. They all have weak points and strong points. You work toward helping your children reach their maximum potential, whatever their strengths are. Also, the fears that we have as parents of blind children are the same as many of the fears parents of sighted children carry. They all worry their children won't be able to take care of themselves or travel by themselves or feed themselves. We just have to figure how to teach our kids how to do things without sight.

Carol Castellano (mother of Serena): That just about everything can be done by a blind person. You just have to learn how.

Penny Duffy (mother of Abby): Right now you think everything has changed. It hasn't: She is still the same six-year-old she has always been. It will truly be okay. She will be fine. Actually, she will thrive. Be careful how your negative views of blindness change Abby's view of herself. She will pick up on it. There will be a day that you will realize as she hides her white cane in pictures that she is embarrassed. Start by using the word blind. It is not a scary demon; it is just another part of your normal six-year-old daughter. Braille is a huge key for her future. Contact the National Federation of the Blind. Don't be scared of the high expectations; embrace them. Meet many different blind adults. They are a huge key for you to see how she will be fine.

Misty Loveday (mother of Easton and Owen): I guess it would be this: "Life goes on." It REALLY does! The hurt, disappointment, and sadness will eventually fade, and love, pride, and wonder at just what your child can accomplish will bloom in their place. Easton is legally blind, and he amazes me every day at all the things he can do, even though he's nonverbal and has autistic tendencies. Little Owen is such a joy, and I believe that his blindness allows him to see straight through to the hearts of his caregivers. He knows the ones that love him and the ones that are just performing their clinical duty.

Cheryl Timmins (mother of Nola): I would want to tell my past self my child's life won't be limited in any way. I will always encourage and remind her that she is capable of anything she makes up her mind to do. It's just a matter of deciding and moving forward.

Alison Tarver (mother of Nicholas): I would tell myself to experience sleepshades earlier rather than later. It is hard to understand, have patience, and recognize the challenges if as a parent you have never experienced what they are experiencing.

April Gremillion (mother of Addison): I would say to not be scared and that the blindness does not define her but is just a characteristic. It's really hard to just say one thing. And I have to say it wasn't until after our first NFB conference that I knew she'd be okay.

Andy Thomas (father of David): Easy. Don't be afraid. The blind child will actually figure out how to do things; you don't have to learn everything and then teach them. At least, that has been the way with David. David is so IT savvy I will never catch up to him. Believe that great things will happen, because they will.

Teresa Romero (mother of Naudia): I wish my doctor would have told me, "Hey there's more people like you. You're not alone in this. Reach out to other moms just like you, and here's a number to the National Federation of the Blind."

Britney Smith (mother of Brielle): Okay, I would tell my past self one thing. It would be to remain strong. There is nothing you did to cause it. You have to remain strong and educate yourself on the things your child may need.

Carlton Anne Cook Walker (mother of Anna Catherine): Worry less, love more. Blindness is not the biggest battle you'll face—far from it. Nevertheless, blindness will taint others' expectations for your child. Stand strong with successful blind role models against the attack of low expectations.

Courtney McDonald (mother of Passion): I have so many things I would want to tell my past self, but it would mostly be encouraging words (Don't give up! Stay prepared), and MOSTLY TAKE IT ONE DAY AT A TIME.

Nicole Rammond (mother of Jayla): I would like to tell myself that having a blind child is a great advantage. They see things that we can't see. Blind people are very inquisitive and analyze everything. I've learned so much from my daughter, and I never thought she would do things she's doing now.

Kim Cunningham (mother of Kayleigh): Okay, here is what I would tell myself! A severe vision loss, or whatever you may call it, low vision, visually impaired, legally blind, partially sighted, is equal to being blind. You cannot have a significant vision loss and be educated as if you were sighted. Blindness techniques are critical for ALL children to learn (preaching to the choir). I could barely say the B words (blind and Braille) in the beginning. It was drilled into my brain that she wasn't blind, and therefore all the tools that could have benefited her were denied. I would say breathe deep, cherish the moments, and enjoy the ride!

Rosina Foster (mother of Ethan and Roman): If I could go back in time and my past self would listen to me without being in too much shock, I would want myself to know two important things. The first would be to trust my instincts. What I mean is to not just believe what everyone says. Many times I was told that it was normal for blind children to be behind in things and that they would catch up. Really? When? If they are constantly learning new things like all children, when are they going to catch up on the things they are behind in? I really wish I could go back with that one. Knowing to stick to my guns to ensure that my kids were on target would have been better than playing catch up later in life.

Second, I really wish I could tell myself about the NFB way sooner. I know everyone says it, but REALLY, I wish I had connected sooner. Not sure who my guardian angel was that got me started with Braille Monitor and my journey to NFB, but I wish with all my heart that it had been way sooner, when my kids were younger. I still hold it dear to me that I even know about the NFB at all. The knowledge, confidence, connections, and self-awareness that I garnered not only for myself, but for my children, are beyond the value I could give back. Each new valuable thing that I have learned has somehow been a connection to NFB—life-changing and overwhelming, in a good way.

Carol Martin (mother of Stephanie): Let go and let them build up their confidence while they figure out their own abilities instead of trying to limit them.

Kenneth Martin (father of Stephanie): To make sure they are supported in a loving home with a positive attitude. Don't take the easy way out, but let them set their own limits.

Sally Thomas (mother of David): Don't expect that the school system will have your child's interest at heart. They may have their own interests at heart and also may be very uninformed about blindness, blindness education, and special education law. This may also be true of the blindness professionals in your school district. Do not even expect that they will tell you the truth or be willing to admit that they don't know what they are talking about. You need to be informed about blindness education and be honest with yourself about your child's strengths and weaknesses. Stand up for your child's rights. Don't worry about whether or not the IEP team likes you. We got our best results when we pushed hard. They knew we wouldn't back down.

Okay, another VERY important piece of advice—give your children independence. Let them try things outside your comfort zone. My son is able to travel all over Perth [Australia] on the public transit system, solving problems without fear because we have confidence in his abilities and let him get out there and do things on his own. A good O&M instructor can be pure gold in this regard as well.

Camillia Herrien (mother of Jayla): Learn Braille and be your child's Number One advocate! Resources, Resources, Resources!

Estelle Konechne (mother of James): To treat the child as she would any other child and teach them to do things one-on-one, for example, baking, gardening, or riding a bike.

Natoria Womack (mother of Braylon): The one thing I would tell my past self about having a blind child is that with love and support bad dreams can have good endings.

When I first discovered I was pregnant, being a first-time mom, I wanted to ensure that I had a healthy child. I kept my doctor visits, I took my prenatal vitamins, ate my veggies, drank more than eight glasses of water a day, and stayed away from caffeine. You can only imagine the shock that I felt when the doctor told me my child was blind. Not in a million years would I have ever thought that my child would be blind! When I was a little girl I remember seeing blind people in the stores shopping and walking up and down the streets with their canes. I was so concerned for them because I thought that something would happen to them. Now I had to face the reality that my child was going to be blind. I was scared, depressed, anxious, and nervous. I felt all types of emotions all in one. I felt like I was dreaming, even telling myself "It's just a dream," but in fact it was reality. I was in denial for a while because I felt at the time that I didn't have the strength to raise a blind child. I didn't feel confident at all. I was scared of what would happen to my child. Would he ever get to live a normal life? I was even scared of the way people would view me because my son walked with a cane, but I knew that the cane meant his life. I didn't even want to go in public because I knew that people would stare and wonder what happened for my child to be blind, which only made me feel worse. I wondered how my child would ever read, how he would ever walk alone, and how he would live an independent life.

With the loving support of my mother and help from the wonderful staff and Braille teachers at the Louisiana Center for the Blind, my son and I now have the tools we need to overcome my fears as a mother. My son has had many wonderful Braille teachers and cane teachers. My son can now read Braille and walk alone while using his cane. He even has dreams of becoming a professor so he can teach Braille to other blind people. He's now eleven, and he's starting to lead his own life independently, making his own choices of what he thinks might be best for him. He goes to NFB BELL Academy every summer, and he comes back every year with more tools and information that can help him along the way toward becoming an independent person. I'm so thankful for that!

One thing I can say about this journey is that what once seemed like a bad dream has turned into a happy ending. My son and I are living life more happily than ever because he now has the tools and information to help him live a comfortable life.

Pete Harvey (father of Mike): Try to limit your stress when you realize your child is blind. Do not feel sorry for the child or yourself. Be thankful for the child and raise him in a loving home. Give him or her all opportunities, including sports, educational activities, workshops, and camps. Remember to explain everyday things to the child when needed. Above all, do not hold the child back, pamper, or baby him. Treat him or her like you would treat his older or younger sibling. In no way limit the child's ambition.

Diane Corbitt (mother of Bre): Treat them like you would any other kid. Let them experience things like a sighted child would, and they will have a more fulfilling and well-rounded life. Allowing them to experience life like any other child will help them to be better adults.

Virginia Davis (mother of April): That's a hard one because I don't think I would have done things too much differently. To her dad and me, April's intelligence was apparent from the start, and that's what we focused on. She did most everything her sighted friends did. When she was evaluated at six years old, she was referred to a gifted school, which we gladly agreed to, even though her other school was "safer" in terms of providing for her blindness needs.

For some reason, when she got to high school, we sent her to a school in a nearby suburb that didn't offer her enough academic challenges, even though she had been accepted into a gifted program in the city. As her mom, I was afraid to let her go to the gifted program because I was afraid for her safety. Looking back, I should have let her go. She was bored at her high school and was way ahead of her peers, scholastically, and she was excellent at getting around the city by herself. I think April remembers those years with some resentment.

I should mention that from an early age, she always balked at being taught Braille and using a cane because she had some residual sight and hated being labeled as different. Unfortunately, her dad and I complied too readily to her wishes. It got her into trouble later on when she got to college, where the print in books kept getting smaller and she found it harder to keep up.

Looking back, we should have insisted that she learn Braille and learn how to navigate with a cane when she was in grammar school, if not sooner. In the long run, it would have made her life a lot easier.

Andrea and Jeremiah Beasley (parents of Kyle): Okay, you kinda stumped us, and we spent time thinking about it and talking about it. We came up with a few things. Our gut reaction was "nothing." Whatever would we tell ourselves, it would change absolutely nothing we would've done. We have the benefit of knowing that blind people can be successful and live "normal" lives. We decided that we would tell ourselves not to focus on the fact that he is blind. Focus on the fact that he is a kid. Let him be as normal as he possibly can be. He needs chores, fun, after-school activities, and most of all the chance to be a kid!

Laura Bostick (mother of Lindsay): It's hard to narrow it down to one thing. For sure knowing that blindness is not a tragedy was very important. I wish I'd met competent blind role models earlier. That's what gave me the most hope for Lindsay. I wish I'd known that the "experts" aren't always experts. I wish I'd trusted my instincts more. Maybe most of all I wish I'd enjoyed her infancy and toddlerhood more. I spent so much time worrying about my blind baby and not enough time just enjoying my baby.

I hope that you have gotten something from all the words of wisdom shared in this post. I am so grateful to all of the parents who participated. I know that this was a very difficult question for everyone, but I can only hope that it is a blessing to other parents and even teachers. I think the overriding message is, "You can do it." As a parent, you can do it; and always tell your child, "You can do it." High expectations! And remember, they're children first.

I would love to hear from other parents. If you would like to share your thoughts, please leave a comment on this post. And, for all the teachers out there reading this, get ready ... I'm working something up for you, too.

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