Browse By Topic: Planning for the Future

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.


The Importance of Relationships

We know friendships build self-esteem and offer a sense of belonging that can be hard to find. There are actually additional benefits that we cannot ignore for our kids who are blind and may have additional disabilities. I know it’s hard to imagine, but their relationships with kids may also be the key to employment. Eddie is part of a very small community. From the first day of kindergarten, the kids knew who he was and sought him out. He’s been with them for six and a half years, and even though he has challenges with sensory regulation, language, and more... many of them don’t seem to notice. They still say Hi, while rarely getting a response. They make a point of talking to him, even though his scripted response remains, I am fine. While


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


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,


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


3 Helpful Tips When Taking Eddie Somewhere New

Having a child with special needs can wreak havoc on your social life. Invites may come in for parties or more and the energy it takes to attend is sometimes too much. We often beg forgiveness from our friends when we turn down invitations, but fostering our friendships is important. Instead of always saying no, I’ve found some ways to make a new outing more enjoyable for us and Eddie. Not long ago, I took the kids to a friend’s house for a dinner party. My husband was elsewhere, so I knew it would just be me and our three kiddos. From the moment I told Eddie we were going to a party, he just kept saying, “No. No Party.” Because he can become fixated, I heard “No Party” for almost the whole 20 minutes it took to get there. When we arrived, I spent the first half


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


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