Raising a Child Who Is Blind and...

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Emily and Eddie at TSBVI!

Teenage boy smiling

Many parents of children who are blind end up becoming teachers of the visually impaired (TVIs) or orientation and mobility specialists. As our children grow, we acquire greater insight into the complexity of their needs, and become intrigued by the work of their experts. I became a TVI when Eddie was six years old and it was the best decision I ever made.

An initial challenge for me was that living in a small town and becoming a TVI meant becoming Eddie’s TVI. Even if I felt I could switch between “mom” and “teacher,” I think others really just perceived me as “mom.” This changed the way conversations were framed and altered my role on his team. Eddie needed a TVI and “Mom” at his IEP meetings and I couldn’t simultaneously be both. After one year, I was lucky to have a co-worker willing to travel a great distance so I could just be Mom.

As my career carried forward, there was a time when I supervised the itinerant TVI serving Eddie and that also brought challenges. For example, I gave them great latitude in programming and trusted their professional opinion. This helped with district relations, but wasn’t very supportive for the provider. Also, I always had to keep in mind caseloads and equitable services across a region when advocating for what Eddie needed. Maybe this was only a perception I maintained, but I also felt passionate about the other kids who needed TVI time. This obviously influenced my ability to advocate for Eddie without apology.

Now I find myself in the most interesting situation of all. I recently became the Superintendent of the Texas School for the Blind and Visually Impaired (TSBVI). Recently, Eddie became a TSBVI student. My husband and I previously discussed the challenging role Eddie and I both have navigating this campus together, without adversely affecting each other’s days. I don’t think Eddie has conceptualized that only a hallway separates us, but I know he will.

I look forward to helping him learn that when he sees Mom between classes, it doesn’t mean it’s time to go home. I hope he learns how to navigate to my office and makes a choice to check up on me, even if briefly. I also hope that he finds in TSBVI a culture of caring and respect that will empower him to strive to greater heights, as I have already found for myself.

I’m unsure what the exact challenges will be moving forward as Eddie and I co-exist at TSBVI, but I know we will face them together. Sometimes the juxtaposition of Mom/Superintendent is the elephant in the room, but I’ve been impressed with how our team is taking it on. When we’re meeting about Eddie, I feel as if I’m only Mom. They will be continually reminded of that as my child with echolalia divulges our deep family secrets. I’ve already asked them not to hold it against me…we’re all human after all…and nobody knows that better than this community.

Families Learning with Families 2019

Two women smiling for the camera

 Earlier this summer, I was invited back to the Montana School for the Deaf and Blind (MSDB). All of our children were born in Montana. It was the state where we learned how to parent, how to love unconditionally, and how to raise a child who is blind. Our first trip to MSDB happened when Eddie was almost one-year-old and we went many times after. As we moved to Washington and then Texas, MSDB was gracious enough to bring me back to share our story. For me, it is very much like coming home.

Now that we live in Texas, I arrived at the event without my family for the first time ever. As my youngest said on my way out the door, “How can you attend a family conference without your family?” Well, as I told her when I got home...it was hard. Hard because I know how much my children love the experiences and the environment at MSDB, and also hard because I want other families to find hope and accomplishment in our story...and mostly in our Eddie.

As I led the Saturday morning conversation, I looked out on the audience of families with children ranging in age from nine months to 18 years old. They come to this event with eyes and hearts open to new ideas and futures they never imagined for themselves or their children. As their children who are blind and their siblings remain occupied by the tremendous care team, the families simply learn alongside other families. Although I had center stage for a time, I was there for the exact same purpose: to learn alongside them, too.

The motto of the Family Learning Weekend at MSDB is “Families Learning with Families.” I know this well because it’s on all of the t-shirts I’ve collected from them over the years. There is freedom and opportunity in that concept. As a parent, it’s intimidating to speak up in a room of professionals. It’s hard to voice your thoughts or concerns because you don’t want to be seen as incompetent, or even worse, a bad parent. It’s easier to keep your thoughts to yourself, which means our questions remain unanswered.

When learning with families we have freedom to be honest and have the opportunity to speak our mind. There are no right or wrong answers or questions, and parents look around the room to see nods of agreement or tears of compassion, but never questions of competence. MSDB provides a place of unconditional support that even those of us embraced by the field and the profession need...even me...especially me.

Thank you, MSDB. Thank you for filling my cup and allowing me time to embrace families like mine and to share Eddie’s story. Although many days are so good, some are still so hard. Events like yours keep me brave enough to push for the good and strong enough to handle the hard. For those interested in learning more about MSDB’s family event, please go to: http://msdb.mt.gov/campus/summer-programs.html.

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