Raising a Child Who Is Blind and...

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You Look Tired

Blonde woman in glasses smiling with teenage son

If you’re the parent of a child with special needs, you’ve likely heard the statement “You look tired” many times. Maybe it’s at the end of the work day, or perhaps right when you walk through the door. Although you may have received the best night of sleep in weeks, you still can come across as a person who is chronically tired.

This winter, we spent a total of fourteen nights in a hospital over the span of five different stays. Due to my son’s diagnosis, he has medication complications that have rarely caused him to be hospitalized until now. I had forgotten what a couple sleepless nights in a row can do to a person. We were bringing “you look tired” to a whole new level.

Now that our hospital days seem behind us (for now), we have a new enemy of sleep in our house. Bugs. That’s right. For those of you familiar with warm Texas nights, you’ll know that the cacophony of insect sounds is impressive and apparently abrasive to some. As the seasons began to change and more bugs came to life, Eddie decided he wasn’t going to sleep with them making a racket outside his window.

He’d plea, “No more bugs!” “Goodnight, bugs!” “See you later, bugs!” After bugs, and then?!?” To which all we could share was an explanation about the insect life and how we wish we could go find one bug and put it out of its misery to solve our problem, but that bugs don’t work that way. There is never just one bug.

So, again, my husband and I find ourselves trading off sleepless nights and marveling at how Eddie seems to function on so little sleep when we’d prefer to crash by noon. I even found myself grumbling at a new mom on TV chatting about being tired with a two month old. My husband laughed as I cried, “2 months! Try not sleeping for 14 years!”

All of this extra sleep deprivation has reminded me that every family of a child, but especially children with medical needs and multiple disabilities, has so much happening on any given day. I want to focus on pushing Eddie towards a greater level of independence all the time. However, I’m also dealing with hospitals…and bugs. So, to you parents out there who have recently heard, “you look tired,” I look tired, too. Yet, that doesn’t mean we aren’t successful and thriving…just maybe on less fuel than everyone else.

    Confidence, Optimism, and High Expectations Breed Faith

    I was recently thinking about the variety of professionals that worked with Eddie over the years. Being an educator myself and reflecting on my own work, I was trying to remember what made some people stand out more than others. My conclusion was that those who had confidence in their decisions, optimism for Eddie, and high expectations were the ones that I trusted the most.

    I realize that confidence can come with time, and not all of Eddie’s providers had years of experience. Many have had no experience working with a kid who was blind. They admitted when they didn’t know how to approach something or when they were just giving something a try. However, those that could admit ignorance with confidence and had some background knowledge justifying their choices, made a greater difference in our lives.

    Optimism is crucial for us and for all parents I think. We receive so much negativity from doctors appointments, and every IEP meeting can feel like a laundry list of all the things our child can’t do. When a teacher or therapist comes in and speaks to the future, excited about what they are going to do next with our kids, it breeds faith. Faith in them as guidance, and faith in our child to succeed.

    High expectations seem obvious, but they aren’t set high by everyone. We need those in our kid’s life to think the most of him and to expect the most of him. I recently read work by Diane Wormsley, and she described the "intellectual climate" of a child. This idea that the place a child receives instruction and the people they receive it from can impact their learning. By providing an optimistic climate with high expectations, our children do better and achieve more.

    I feel these three ingredients are crucial for everyone working with our kids...including us. That’s right, I’m holding parents to these same standards. Our children know when we’re anxious, unsure, and setting a low bar. We must try not to let them see us that way because it isn’t the best version of ourselves, and we’re not envisioning the best version of them.

    Emily Coleman and her son Eddie laying down together looking up and smiling at the camera

    There are days when we will set lower expectations, as demonstrated in this picture of Eddie and I having a Pajama Day. The bar in our house was very low that day...for Eddie and for me. However, it’s not the norm. This is why I don’t wear pajamas to work, and he doesn’t wear them to school. When pushing towards our goals, we strive to expect more from ourselves, from our kids, and from their providers. Because we all can...which I say with complete confidence.

    More on "Raising a Child Who Is Blind"

    Pros and Cons of Labeling Our Kids Who Are Blind or Visually Impaired

    Marriage and Raising a Child Who Is Blind

    Pushing Limits and Stepping Back

    The Importance of Relationships

    Pros and Cons of Labeling Our Kids Who Are Blind or Visually Impaired

    When Eddie was first diagnosed with Optic Nerve Hypoplasia and given the label "blind," it was something we could grasp. We didn’t know what his future would be like or what additional needs he’d have, but we knew that the word "blind" was now part of his identity. It seemed easily explained and a "go-to" excuse for many of his challenges. This proved to be dangerous.

    When Eddie was in second grade, I think, he received an updated functional vision evaluation, and his teacher of students with visual impairments pointed out some vision that he had. We didn’t even want to talk about it because, to us, Eddie was blind, and we didn’t think his vision should be considered for instructional purposes. By saying he did have some functional vision, it was like she was taking a part of him away from us.

    Pros and Cons of Labeling Our Kids

    As parents, we can cling to labels because they do become part of our child’s identity. It takes a long time to wrap your brain around a term like "blind," and once that has been done, it’s really hard to re-wrap your brain if the definition changes. We have clung to that term, and also his diagnosis of Autism, like it’s an integral part of Eddie. Schools and providers do this too.

    Eddie smiling at the camera

    So, what’s the danger of that? There are so many "pros" when considering labels. It seems having a label gives us direction for instruction and tells us what path to follow. It can provide an answer to questionable behavior. It can even provide access to resources and expertise that we may not be able to find without these labels written in files. They seem to help, but they really can hurt too.

    When we focus on the labels, we seem to have tunnel vision. We look down safe and familiar paths for answers and forget there is a bigger picture. As I shared above, we also use these labels as excuses for why our kids may not be more like their peers and excuses for why they may not be independent. We can use these labels to lower expectations...which is done by us and also done by others. The file is read, the labels are seen, and immediately, they decide what our children can and can’t do.

    Focus Beyond the Label

    Now, labels are often necessary for reasons I already mentioned, but how do we get beyond them? How do we stop putting our kids in boxes titled by medical terms? Luckily, I have an answer for that.

    We focus on our kid. What are they doing now? What are they good at...strengths? What do we want them to be doing next? How can we get them to do that? What are strategies that have worked in the past? We stop saying, "They can’t because they’re Autistic." We stop saying, "They can’t because they’re blind." Instead, we ask, "What can they do next," and we move one step at a time.

    I’m not an expert at this...just yesterday I blamed something on Eddie being blind when the real reason was more complicated. I’m a work in progress, but I am working on it. I want to see Eddie for all the personality traits that can’t be easily categorized because he is an individual. He is funny, musical, affectionate, grumpy at times, obsessed with gum, and kinda in love with Norah Jones. He is not, and never will be, his labels alone.

    More from "Raising a Child Who Is Blind"

    Marriage and Raising a Child Who Is Blind

    Pushing Limits and Stepping Back

    A Holiday Concert Success

    The Importance of Relationships

    Low Vision
    Planning for the Future

    Marriage and Raising a Child Who Is Blind

    A young Emily Coleman in a wedding dress and her husband sitting in the back of a limo after their wedding

    James and I recently celebrated our 16th wedding anniversary, and my sister shared this photo of us smiling widely from the back of a limo. I look at that young couple and the life they envisioned in their mind... and laugh at how far it drifted from their original course. We were so young and so sure of our plans.

    When Eddie was born, three and a half years into our marriage, we learned that we don’t actually get to make all the decisions. This unpredictable course brought forth many challenges that not all relationships will survive. Those without these special kids may wonder why that is... because shouldn’t these children multiply the love in a home? Shouldn’t they bring out the best in us as we overcome unique challenges? The answer is yes and no.

    I can tell you that like most parents, our greatest shared joys come from all three of our kids. However, when Eddie meets success, only the two of us can truly appreciate the magnitude. As his parents, we have a shared connection that allows us to laugh, weep, high-five, and dance when milestones and challenges are met.

    On that same note, we share in the disappointment. When things aren’t going well, and we can’t help him, we share those lows. We fight about how to make it better. We disagree on what level of expectations should be set or how we can support him. I believe statistically most couples fight over money. In our home, our epic arguments are more often over how best to take care of Eddie.

    I’d guess this is because Eddie is very complex, and there are no easy answers. We can’t pick up a child-rearing book that will tell us how to assist communication, how to teach daily living skills, and how to stop a tantrum. We most often learn by trial and error and by the advice of multiple therapists and educators. Although the advice is helpful, and sometimes life-saving, we are the only ones that understand the 24/7 impact of our child’s disabilities.

    So, as I look back on a younger version of us, I consider the path our life has taken and am grateful we took a chance. You see, I didn’t even know what kind of parents we’d be let alone what kind of parents we’d be to a kid like Eddie. We’ve been lucky as we’ve kept our sense of humor and have come out the other side of every argument. However, that doesn’t mean this path has been easy, and we know there is nothing simple about co-parenting a child like ours.

    Looking into the future, there is even more uncertainty as Eddie ages. Each day seems to bring more questions instead of answers, and that leaves us vulnerable to fear and disagreements. Our intent is to continue to seek out the joy and humor first and to forgive each other when the bad days roll through, as they are bound to do. We’re blessed with three pretty great kids, and they are proof that 16 years ago a couple of youngsters made the right choice.

    More from "Raising a Child Who Is Blind"

    How Edward Came into the World

    A Day in the Maternity Ward

    Growing Up in Therapy

    Pushing Limits and Stepping Back

    Emily Coleman with her husband and their three children, standing outside on a porch

    Eddie wakes up everyday asking what is going to happen next. He likes a schedule, prefers to stick to it, and adding something new can make him uneasy. Children who are blind can be unsure about new experiences. Being unable to predict what will be expected and unsure if they will be successful can be scary. However, we keep pushing him so that his experiences broaden and his ability to participate in life expands.

    Because Eddie isn’t an only child, he is often asked to attend events to support his sisters. These include games, band concerts, girl scout functions, and more. He isn’t always impressed with the activity, but once we’ve committed to include him, we do everything we can to help him successfully participate. Unfortunately, not every attempt succeeds.

    This weekend, we took him to his younger sister’s, CC’s, first basketball game of the season. When he entered the gym, he became more upset than we’d seen him in a long time. He cried, shrieked, threw things, ground his teeth together, and clenched his fists. We tried to calm him in a variety of ways, without success. In the end, his dad had to take him for a car ride until the game was over... missing out on CC’s first game.

    This is where stepping back comes in. Eddie was hysterical, pretty much in crisis, and no efforts on our part were going to change that. We have high expectations, and we push him a lot, but we also recognize when he is trying to tell us "No." He tried. He willingly came along until the noise in the gym, or some other factor, put him past his breaking point. After that, it was up to us to show him he was safe, and he was heard.

    As parents, it’s often our job to have the highest expectations. We can push boundaries the farthest because we have parental rights that allow us to take bigger risks. However, it’s also our job to step back sometimes and give our kids a break. That’s our parental right too. They need us to listen to not only their words but their emotions and actions.

    When we take a step back, we are building trust. This allows our kids to be "all in" next time so that we can take a giant leap forward.

    More from "Raising a Child Who Is Blind"

    A Holiday Concert Success

    The Perfect Day

    Growing Up in Therapy