Browse By Topic: Autism Spectrum Disorders

The term "autism spectrum disorders" refers to a range of neurological disorders that affect a child's ability to communicate, relate to others, and understand or respond to sensory input. In general, the cause of these disorders is not known. Dealing with a child who is both blind and autistic, with special needs can be doubly difficult, because so many agencies and services are set up to deal with one or the other—they're either familiar with or experts on blindness, knowing little or nothing about autism, or they know about and have expertise with autism, but rarely are comfortable with or have knowledge about blindness.

Autism spectrum disorders and visual impairments affect each child in a unique way. Children with such a disorder may have a mild or severe condition, and they can range in their functioning from gifted to severely cognitively impaired. It is important to be aware that children need to have more than one characteristic of an autism spectrum disorder to be diagnosed with the condition.

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


Marriage and Raising a Child Who Is Blind

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


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


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


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


Advocacy Without Apology

As a parent of a child who is blind with additional disabilities, I feel like apologizing a lot. I’m telling strangers I’m sorry because my son might touch them or their things in passing. I might apologize if he calls out or sings loudly in quiet settings. I might even apologize to family and friends when we can’t attend events because sometimes it’s just too hard. At school, I feel like apologizing because he might disrupt class. I feel bad that his behavior is sometimes hard to manage. I even want to apologize to the community because his education is expensive. The urge to


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


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


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


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


Autism Awareness Month: The Child Versus the Label

Many children who are visually impaired are also diagnosed with autism, including my son Eddie. For Eddie, it was simply because his blindness alone could not explain his developmental delays...and we needed more answers. When he was given the “label” of autism at five, it seemed the best explanation for concerns that could not be explained otherwise. After the diagnosis, we were met with questions and concerns from educators in the field of blindness. Is he really autistic? Are you sure it isn't just


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,