Browse By Topic: Personal Reflections

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


Pushing Limits and Stepping Back

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


A Holiday Concert Success

Eddie is participating in middle school band this year. As a sixth grader, it’s the year they are learning musical instruments, and this matches his skill level. He is able to play the melody of most tunes on the piano by ear and spends much of his free time tinkering. We knew integrating him into band wouldn’t be easy because he isn’t a huge fan of playing along with others. He prefers his own musical talents, and when others try to join him, they are quickly excused. When sitting down next to him on the piano bench, I usually get a light push and the familiar comment, Bye, Mom.


Gift-Giving Reflection

Yep, I know it’s hard to believe, but the season for gifts is quickly approaching. Every year, we struggle with what to get Eddie for the holidays and so does everyone else. It’s hard to find the perfect gift, but by reflecting on some winners, I’m hoping it will help with the selection process this year. So, here are five of his favorites that have withstood the test of time. Musical instruments. At this moment, Eddie has in his room a set of bells, a snare drum, a keyboard, four different sizes of bongos, a tambourine, a guitar, and a harmonica. His preferred instrument varies


Our Role in Defining Our Kids

I was recently at the American Printing House for the Blind Annual Meeting and had a discussion with educators about the role of parents in helping others understand our kids. I was sharing my opinion (as usual) about how parents have to take the lead on this to make others understand our children outside of their labels. For vision, ophthalmologists and optometrists provide the technical report. They diagnosis our kids, tell us what (if any) glasses they need, and while using very big words, explain why our children are blind or visually impaired. Then, the


The Perfect Day

I have written many times about the benefit of recreation for our son, Eddie, and for kids like him. I’ve talked about exposure to activities so he can simply learn how to have fun. Recently, we went on a family bike ride with our close friends, and the benefits were even more than we expected. We live in the Pacific Northwest, and we’ve heard many rave reviews about the Hiawatha trail. It’s a bike ride on the Montana/Idaho border that follows an old train route. It goes through tunnels, over train tressels, and the entire path is downhill. Based on the downhill part, we knew it could be a good fit for Eddie... and if I’m being honest, for me too. We loaded up the bike we received from the NW Association for Blind Athletes and the Pacific Foundation for


Proximity Does Not Equal Participation

Eddie was able to briefly attend a camp for kids who are blind this summer. The camp is meant to teach independence, recreation, social skills, and other parts of the expanded core curriculum, which is specific to children who are blind or visually impaired. Although his involvement was limited due to some health factors, it was important for us to have this opportunity. All summer Eddie had joined our family as we took his sisters to camps, watched their final camp performances, and sat nearby as they connected with their friends so they could make the most of summer. Eddie didn’t really have any social outings for himself, and although he was nearby as other kids played and participated in


A Day in the Maternity Ward

Recently, I became an aunt again. My sister added an adorable little fella to her growing family. Being a sister to the pregnant lady, I spent much of her labor hanging out in the waiting room at our local hospital’s maternity ward. Although my sister was in the delivery room the day Eddie was born, she had plenty of help this time around and didn’t need me right by her side. So, I patiently waited with the grandparents. I drank enough coffee to fuel an airliner, knitted the bulk of a sweater-vest I’d been working on, and simply watched. I watched pregnant women parade in and out as they were transported to delivery


Growing Up in Therapy

I’d wager that almost every child with a visual impairment ends up in physical, occupational, speech, etc. therapy at some point in their life. When our kiddos are very little, it seems every therapist in our zip code wants to visit or be on our child’s team. When Eddie was diagnosed at four months old, he was immediately seen by each of the above-mentioned people, and we gladly welcomed them into our home. As a mom raising a child who was blind, I was open to any and all guidance. I asked to see his teacher of students with visual


Tears, Language Delays, and Seeking an Answer

Last night, when we went into Eddie’s room to say goodnight, we found him sitting on the edge of his bed with his lower lip sticking out and giant tears quietly sliding down his face. We sat down on either side of him, but his continued silence and steady crying gave us no answers. Eddie is 12, and he still can’t tell us what’s wrong. He still can’t say if he’s hurt, why he’s sad, or if we can help him. As I’ve shared hundreds of times, Eddie is blind, but he’s also autistic. He lacks most expressive language and what he says is often a repetition of something he’s heard, which is called echolalia. Most days, we can find out what he wants or needs through a series of well-versed questions. Other days, his bank of scripted responses is empty and frustration


Outdoor Education for Kids Who Are Blind

I just returned home from a unique opportunity for educators and especially unique when considering teaching children who are blind. It’s called "American Wilderness Leadership School" offered through Safari Club International. The purpose of the camp is to offer curriculum and perspective to teachers surrounding conservation of wildlife and resources. I attended to find new ways to educate our youth who are blind about the outdoors and resource management. While in Jackson, Wyoming, we spent the days listening to speakers, going on field trips, getting trained to teach archery in schools,


Wax Museum and No Man’s Land

Having a child in special education can feel like they are in "No Man’s Land," especially if they spend a lot of time away from their peers as Eddie does. His unique needs due to autism and blindness make it hard for us to know where he specifically belongs. Because of this, we find ourselves in the dark sometimes when it comes to school activities and information. This spring, we were excited to be included from the beginning with the school’s popular "museum" event. Every year, his elementary school puts on a "Wax Museum" where they pick a famous character, dress like them, and prepare a short speech. They stand posed in the cafeteria, and spectators stop by and hand them a ticket if they want to hear their presentation. Eddie’s school started reminding us of this event


It’s Only a Cabbage

Running errands can be tricky with any children, anytime. I like to be efficient and purposeful when getting things done, and kids don’t really work that way. I recently had a high need for food and more and ended up taking my two youngest to town, including my son who is blind. We started at a bakery due to gathering Mother's Day treats for my pregnant sister, and it was a good excuse for baked goods. We found a parking space near the front, a manageable line, a gluten free brownie for my son, and an open table near a window. Eddie loved the snack and a dog passing by had to


How Edward Came into the World

Last week, Eddie turned 12, and it didn’t knock the wind out of me as it has in year’s past. I wasn’t met with fear about his future, anxiety about how much he has to learn, or any measure of grief over the life I once envisioned for him. Instead, it felt very much like a birthday for any kid... a day of celebrating Eddie. At one point, I even browsed through his baby book where I rediscovered the narrative of his birth. Basically, I went to the hospital with his Dad and my sister, was induced because he was late, and had my water broke because it wouldn’t go on its own. Eddie was big; my doctor and a pediatrician were on hand, and after the delivery, everything seemed to be good. All the grandparents rushed the hospital room, we were moved to recovery, and Eddie’s stats were


Gaming Day with Students Who Are Visually Impaired

Last week, we took Eddie to an accessible gaming day sponsored by the Washington Talking Book and Braille Library for students who are blind or visually impaired. The event was organized by a local Teacher of the Visually Impaired (TVI) and included tactile board games, Legos, Play-Doh, lunch, and more. Eddie had a blast, as seen in this overly joyous picture of him. Because blindness is such a low incidence disability, many students in rural districts have never met another kid like them. Even within


International Women’s Day as an Administrator, Teacher, and Mom

International Women’s Day was March 8th, and all day long, many of the strong female influences in my life came to mind. My Mom, my sister, my aunts, my grandmas, my friends, and my female in-laws. I don’t consider myself a “social butterfly,” but I do gravitate toward book clubs, quilt groups, and more with admirable women. I celebrate all these relationships in different ways and am grateful for their influence in my life As a parent of a blind child, I’ve also met many strong women. Mothers who didn’t expect to raise a child who was blind but have quickly met and raised


The Understanding of a Sibling

The other morning I woke up with my 7-year-old in bed with me (which happens sometimes) and we were listening to Eddie down the hall. He typically wakes up and immediately turns on his bedside radio, which is how we know he’s up. As we lay there quietly, my daughter started peppering me with questions about her brother who is blind. CC asked, “Mom, why does Eddie like to listen to the radio?” I replied, “It’s a little bit like when you binge watch “Monsters High” on Netflix. He enjoys listening to music, and he can do it all day long.” CC said, “But he doesn’t listen to just music,


Quality Eddie Time

Eddie with a toy bird in a cage While Eddie’s sisters were attending a volleyball camp recently, Eddie and I had a rare opportunity to spend a few hours alone. Although I had plenty of errands to run, and things to do, I decided to take it slow and operate on Eddie time. We began by visiting my sister and her fiancé and then had lunch with James, Eddie’s Dad. Eddie was in a great mood, enjoying being the center of attention for a change. (His younger sister usually steals the show.) After lunch, we still had two hours to spare. I gave him many options and our conversation went a little like this: “Do you want to go to the


If It Doesn’t Work the First Time, Try Again!

When Eddie was younger, I’d take him to the grocery store and talk about everything. I’d point out what was on the shelves, the various smells, and even how much things cost. I was teaching him the concept of “grocery store”...and he was not impressed. So, grocery stores were hard with him, and over time we stopped taking him. Well, times change, and his Dad just proved that we should always try again. James, Eddie’s Dad, told me one day recently that he was taking Eddie grocery shopping. I thought he was crazy, and probably said something sarcastic like, “Good luck with that!” In the past, Eddie would cry in the store, not want to walk, and usually only lasted through the front door. James felt that it was time to try again, and he did. His report afterwards


Back to School and Expecting the Unexpected

This summer I have been constantly surprised by Eddie. When his actions exceed my expectations, I’m almost ashamed that I’m surprised. I should expect him to be clever, teachable, and funny. Yet, I don’t always see it coming. As we go into another school year...I’m going to expect the unexpected. I’m going to expect to be surprised like I was all summer long. When we went to a water park, I was avoiding the lines. I hate lines, and I assumed Eddie would, too. However, when he loved the “family ride” with an enormous line, the line didn’t matter. I said, “Do you want to go swimming, or STAND IN LINE?” To me the answer was obvious, and it


Recognizing This Guy

If you check my blog regularly, you may be wondering what happened to me?!? This is probably the longest I’ve gone in a while without sending something out into cyberspace. Well, I’ve been doing a variety of cool things that are spreading me a little thin, but are totally worth it. Some of my time has even been spent traveling with Scott Truax from FamilyConnect and talking to parents in other states, which is more than cool. When discussing my recent excessive travel with anyone, their first question is about how my family handles my absence. Honestly, they don’t miss a beat. The reason they do so well whether I’m home or away is because of this guy. For once, “this guy” doesn’t mean Eddie, but my fantastic husband, James…seen here taking a well-deserved nap with the fantastic


Making Plans for Father's Day

Note from Emily: There is no one better to write a blog for Father's Day than the best Dad I know, my husband, James. I'm grateful for his insight in this posting, and simply for who he is every day. All right, fathers out there who are struggling to make the right decisions, while being lucky enough to have a child with a disability under your wing. It's hard enough to have children with "normal" lives who depend on your every decision to be the right one. Decisions can be made to make your life better or the life of your child. I've always been told "happy wife, happy life." Well, that's not easy when you're dealing with a child who needs more of your time than your other