Blog Posts by Emily Coleman

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


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


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


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


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


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


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


Accessing an Inaccessible World

Last month, my book club read “The Rosie Project” by Graeme Simsion. In short, it’s the story of an adult man seeking a wife. A man who presents as autistic and struggles with social connections. There is a scene in the book where he is considering a relationship and wondering if he will find “satisfaction.” The author wrote, “Another world, another life, proximate but inaccessible.” As I read that sentence, I instantly related it to Eddie; partially because he is autistic, but also because he is blind. This character in the book is wanting happiness, connectedness, and relationships like other people. Knowing that he sees it happen every day, going on all around him, and yet, he is unable to access it himself. Just like Eddie. I jokingly call Eddie a “lingerer”


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


5 Tips for Medically Treating a Child Who Is Blind

Recently, we had the unfortunate experience of spending a few days in the hospital with our son, Eddie. Our brief medical residency reminded me that not everybody knows what to do with children who are blind. Here are five tips I thought of to ease a hospital experience for our kids. 1. Pay attention to the notes in the file. Within our first hour, we had people come in and wave in Eddie’s face and ask him if he liked the designs on their shirts. Each time we had to say, “He’s actually blind.” This left us feeling like non-subtle jerks, and them feeling like idiots. It clearly says he’s blind in


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,


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


The Emerging Risk-Taker

We just returned from our annual trip to the ocean. As Eddie gets older, and has a better understanding of his environment, travel has become more challenging. He misses the predictability of home, and going on a trip means almost anything can happen. The rest of Eddie’s family loves that. Eddie...not so much. Driving to the ocean takes us about 8 hours and for most of the trip we heard, “After ocean...Then?” When we didn’t have something concrete to explain, he would pretty much fall apart. After that, his parents would sometimes fall apart. Obviously, our trip didn’t start off with family sing-alongs and group


Father's Day Is Coming! Make Dad's Gift Meaningful to Him and His Child Who Is Blind

Parents truly love homemade gifts. My son who is blind has educators that have done an awesome job providing us with treasures. Getting something crafted by our own children is always a treat...and quickly put on display. The best gifts are meaningful to us, but also meaningful to our child, too. Here are four tips for creating a homemade gift perfect for Dad AND for their child who is blind. 1. Make it tactile. For Mothers’ Day this year I received the necklace being modeled in this photo by my sighted 6-yr-old. My son made it at school out of clay, and he used the bottom of his shoe to “stamp” a design. The


Summer Is Here…Now What?

Like with every summer, we always find ourselves wondering…"Now What?" Eddie LOVES routine and seeks it out in every aspect of his day. If we say “time for lunch”…he answers with, “And Then?” Or, “After that?” He simply wants to know what his day looks like, and the concept of “free-time” isn’t something he handles well. I think I talk about the lack of routine in our house every summer, and how we can’t seem to accommodate all of Eddie’s “routine” needs. Even during the school year, he’ll want to know his entire weekend schedule until he goes back to school. He doesn’t like surprises, and really doesn’t like when we answer his scheduling questions with “I don’t know”


Mother-Son Night 2015

Eddie’s school has parent/ kid nights twice a year, switching up which parents attend with which kids. Based on the rotation, mother-son night arrives every other spring, and the last time I wrote about it was in 2013. It’s an event that I feel Eddie and I simply can’t miss. Just like last time, Eddie and I dressed up for the official photo that gets taken and headed out the door. What was different from last time, was that I wasn’t nervous or afraid to attend. After a few years, the staff, students, and school families are well aware of Mr. Eddie and the unique perspective he brings to any event. There is always a risk of a meltdown, or unease due to his autistic nature…but


A Trip to NYC Meant a Moment with Helen Keller

I was excited to visit the American Foundation for the Blind (AFB) office in New York City last week. I knew that I would get to speak with many AFB employees and find out about their current projects and future endeavors within the field of blindness. What I didn’t realize, was that I would get to have a moment with Helen Keller. What may not be well known, is that AFB is home to the Helen Keller Archives. There is a very enthusiastic archivist also by the name of Helen (seen in this photo with me) who takes care of all


Eddie Turns 10

Today was a big milestone for Edward…he jumped into the double digits. Having him be a decade old is kind of a shock and has me reflecting on the years that have past so quickly, which is why I had to post this baby picture of him. Along with reflection, I’ve also been thinking a lot about the next ten years, and where Eddie will be then. Even a year ago, I wasn’t prepared to discuss the big scary future. Eddie’s future gets my heart racing because the path isn’t clear. For my oldest daughter, she’s constantly trying out theories for adulthood. She wants to attend Oxford…maybe Stanford…or now she is considering the Air Force. All of


Egg Hunt Leads to Cane Usage!

From the moment Eddie began to willingly carry the long white cane, he has been a bit confused about its purpose. Some days he carries it 2-3 inches above the ground, he may be seen swinging it like a flag, or even pounding it into the pavement like a club. The concept of “sweeping” is mainly used when verbally prompted to do so. Mostly, it’s this attachment to his arm that he knows to take whenever he leaves the house...but doesn’t seem to know why. Before he was on his feet, we were taught to put items in his hand that would extend his reach into the environment. He was given wooden spoons, and similar items, and encouraged to reach out and tap objects or textures he wasn’t able to visually examine. As soon as he was walking, the cane was mandatory, and orientation and


Happy Easter and a Holy Event for My Child Who Is Blind

As I’ve never outright stated in this blog because I didn’t want to alienate anyone...or alienate myself from other parents, I am Catholic, and have always been. For me and my family, this means that children receive sacraments at certain times in their life. One of those blessed occasions for Eddie (and his sister, CC) happened to be today. Due to the ceremony and tradition involved, I didn’t know how Eddie would ever participate in these holy events; not due to blindness, but his uniqueness tied to Autism. Luckily, with the support of our parish, and especially our Priest, Eddie was encouraged to join CC and two of their peers. Anticipating the event made me very nervous, and the morning's rough start didn't help. Easter morning is full of chaos. There are Easter


I Love the Language from My Child Who Is Blind

Many children who are blind speak in a way called “Echolalia.” It basically means that their language is repetitive or “echoes” something they have heard. Usually it's an immediate repeat, which is often true with Eddie, but I think of it as broader than that. Words and phrases can be learned from television, songs, or even from other people. It often is thought to be without meaning, and when it comes to my son sounds like complete nonsense at times. His favorite time to echo phrases is when he finds himself really upset. Terms that come often are “Yo Gabba Gabba!” “Who lives in a Pineapple under the sea!!!” and I’m sure you’ve caught on to the theme here of random


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


What Activities Does My Child Who is Blind Do Outside of School?

Today I was interviewed by a pre-school teacher working to become a teacher of the visually impaired. I had a lot of fun talking to her. One of the questions she asked usually leaves me tongue-tied, but to my surprise I had a reply. She asked if my son participated in activities outside of school. When he was younger, he was in music therapy and horseback therapy. Although these weren’t exactly “t-ball” he was still doing something fun. He was interacting with people outside of school, and trying new things. For me, this counted as extra-curricular. As he got older, his therapies changed a bit, but his interests didn’t evolve. He moved on from music therapy, but still liked listening to Barney, Dora, and kid songs in general. Although he is now almost ten, he acts much


Braille Valentines and Bribery

For most elementary schools and parents, February means the annual valentine preparation. Last year, I was in “go mode” and was able to quickly get Eddie’s valentines in order, but with little help from him. As an afterthought, I realized I didn’t exercise any patience, and just saw it as an item on my daily checklist instead of a learning opportunity for Eddie. Just like last year, I started by ordering braille valentines from National Braille Press. Then, I had high hopes of having Eddie braille his classmates’ names on the envelopes with my help. He does like to use the brailler on occasion, but it can


Teaching Children Who Are Blind While Raising One, Too

Along with being the parent of a child who is blind, I’m also a teacher of the visually impaired (TVI). While recently spending the day collaborating with another TVI, I was asked a question that I had been asked before. The question was something like, “Is it hard to spend all day working with children who are blind, and then go home and continue the job 24/7 with your own son?” The answer was a simple and affirmative, “Yes.” Some days it is pretty hard, especially when progress can be slow for students…and progress for my son is always slow. I start wondering if I’m doing any good, or if I’m really educating the kids I work with as well as I should


Hope and a Football Metaphor – Bear With Me

Every year, we take Eddie to Seattle for annual check-ups with some pediatric specialists. I’ve written about our annual doctor visits before since it’s simply part of raising Eddie. This year, we happened to be in Seattle for quite a weekend. Seattle had their big NFL game on Sunday, which would determine if the Seahawks would again be in the Super Bowl. I’m a mediocre fan at best, but most of my family are Seahawk fanatics and have been their whole lives. Part of our “doctor trip” included babysitting for my brother and his wife so they could attend the big game. For anyone who watched the game, or who heard about it the next day on the news, you know that the


Holidays and “What Ifs”

After a year and a half of extensive loss within our family, including multiple grandparents and my father-in-law, we were anxious to spend the holidays surrounded by relatives. We’ve been staying with my brother-in-law and his family, and enjoying multiple events. Living amidst a household of six kids or more under one roof can be challenging for Eddie. My daughters love the chaos of holidays with the cousins, but Eddie isn’t always impressed. As usual, we can’t help but ask the negative “what if” questions when planning for the season. What if he is constantly upset? What if he doesn’t sleep? What if he gets


Santa Cruise and the ECC

As a gift to my children, my kids’ Grandma gave us tickets to go on a local “Santa Cruise.” This involved riding on a boat in a local lake out to an island highly decorated for the season, and Santa himself available to greet the kids. This became another opportunity to work on the Expanded Core Curriculum (ECC) during the Christmas season. Having never participated on a “Santa Cruise” before I didn’t know what to expect. I knew there were lots of Christmas lights and


Gingerbread Houses for Charity and for Eddie

To continue our holiday outings inspired by my Expanded Core Curriculum (ECC) articles in relation to the season, we made gingerbread houses. A favorite charity of mine, The ISAAC Foundation, was holding an event to raise money for families affected by autism, which includes us. Their generosity helps out Eddie immensely, and we wanted to participate to give a little back. My sister was looking for a gift idea for the kids, and I asked her to purchase gingerbread houses for my


Holiday Outing with The Grinch

This season, as I thought about the holidays, I wanted to be sure to include Eddie. When asked how Eddie enjoys the season...besides listening to Christmas music on headphones...I had no reply. I thought, “Is Eddie tattling on me? Is he telling the world that I let him veg out frequently with our holiday radio station?” Whether or not Eddie was calling me out on allowing a passive holiday existence, I realized I had to step up my game. This idea spurred the articles I’ve written for FamilyConnect on


How Do You Incorporate the Expanded Core Curriculum Into the Holidays?

As most of you know, since Eddie was born, I've also ventured into the professional realm of blindness, and am now a teacher of the visually impaired (TVI). The Expanded Core Curriculum (ECC) is specific to children with visual impairments, and covers 9 areas of instruction needed for a child with a visual impairment so they can access the world just like their peers without a vision loss: Orientation and mobility


Gum as a Tool

Almost two years ago, I wrote about introducing Eddie to gum which turned into an immediate obsession. Even still, gum is the reason Eddie gets up in the morning and his number one request at all hours of the day. By all hours...I mean ALL...which is why we tried to turn gum into a tool. Gum was simply too easy for Eddie to get his hands on. Mostly, because his parents were suckers for any kind of a verbal request on his part. Due to his language delays, we are always so excited to hear a complete sentence that we


Superman Eddie!

Eddie dressed up as Superman for Halloween, and he enjoyed his costume more than he ever has liked any costume. It might be because I took some of my own advice about Halloween costumes. It turns out that a little strategy can go a long way. Eddie wears a "Spio" suit to help with his sensory needs. It's basically a spandex outfit worn under his clothes and it covers almost his entire body. Lucky for us, his new suit was blue...which was perfect for a Superman costume. This is how we decided to incorporate his "medical" equipment. While shopping at the local costume shop, we found a Superman cape that matched


Halloween Costumes: Things to Keep in Mind If Your Child Is Visually Impaired

Many kids look forward to Halloween and the opportunity to dress up. Sometimes, children with visual impairments may need help in the imagination department. Our kids may not engage in "pretend play" like their typical peers, and therefore may be unsure about dressing up in a costume. In fact, some may have no desire to wear a costume, or simply no opinion about what their costume may be. Here are some quick tips to help those harder kids enjoy the costume aspect of this uniquely bizarre holiday. 1. Prep for the season. Encourage your child's particular interests and think about how they could be made into a Halloween costume. For example, if you child has been enjoying Dora the Explorer, start helping their imagination along by pretending to go on adventures just like


IEP Preppers

Maybe you’ve heard of the TV show, “Doomsday Preppers.” It’s about people preparing for the end of the world in some pretty interesting ways. Although I wouldn’t consider Eddie’s IEP anything close to a “doomsday” event, I’m learning it does take some preparation. This year, unlike years past, we decided to be IEP “Preppers” so we would know exactly what to expect and be ready for it. First, we needed to gather our resources. We talked to family members, others we rely on, and outside therapists to get their opinions about what Eddie should be doing at school. Other parts of Eddie’s “team” were doing the same thing…seeking consultations with “experts” to help guide their goal writing and decision making. Second, Eddie’s Dad and I sat down together and talked about


How is Eddie Connected to the Rest of His Family?

Yesterday, James and I went to a family support conference for children who are developmentally delayed. Due to Eddie having Autism in addition to being blind, this conference definitely spoke to us. Most of the event was considering Eddie's future, which can be difficult for anyone raising a special needs child. The concept that stuck out the most in all we heard was the idea that, "Individuals live within the context of their family." Eddie has a lot of unique things about him. First, he's blind, and none of us are. Second, he has little verbal communication skills, and my daughters talk ALL the time. Third, he prefers to be alone without much interest in the rest of us, which makes us all think of him in a separate context. When I think about what makes up Eddie, I think


Laundry Lesson Learned

As I’ve written before, I try to get my son involved in chores around the house. Lately while doing laundry, Eddie will show up and sort-of simply hover. While he is lingering I may say, “Eddie, do you want to help fold some clothes?” The response is often, “No.” I then might say, “Eddie, do you want to take these towels downstairs?” Again, I hear a definitive, “No.” So, he continues to stand there, attentive to the task, but not wanting to jump right in. Since I can tell he is curious, I talk about what I’m doing, and describe what I’m taking in and out of the washer and dryer. I know that he has to learn how to do laundry someday, and I might as well start explaining what it’s all about now. Although I encourage and sometimes make him help out, I never really know how


Advocating for My Child Who is Blind

I’m not a very confrontational person. Before I directly accuse somebody of something, or announce a grievance, I try to consider all sides. I don’t like jumping to conclusions, and I generally think people act with good intentions. Over the nine plus years Eddie has been in my life, there have been many times when I needed to stand up for him because he couldn’t do it for himself. Sometimes, I rose to the occasion. Other times, I’ll admit, I decided to play things safe. Safe as in not ruffling feathers…not being a crazy mom…and not being “that parent” which we all try to avoid. I’ve sat in meetings at school, and wanted to cry, or shout, or both. I’ve sat in doctor’s offices and wanted to ask another question, and another, and even more, but chose not to because I felt


Where Would You Go If You Weren’t Afraid?

In August, I started to get word that the circus was coming to town. All of the teachers of the visually impaired in the area (including me) were asked if we had any students interested in getting a “touch tour” of the circus. I immediately thought it was a great idea, but wondered what exactly would be involved. Regardless, I was able to take two of my students even though space was limited. All the kids were able to feel and try-on costumes, sit in a ring suspended from the ceiling, pet the miniature horses, sit on a motorcycle, and the best part...pet an elephant. As fun was had by all, I started to feel guilty that my own son who was blind did not attend. Professionally, I couldn’t coordinate transporting my students along with Eddie. Personally, his Dad had other


Independence for Him Means Inconvenience for Me

Having a child who is blind, requires spending lots of time teaching them to do things for themselves. Helping my son to become independent is maybe the most important part of being his parent. What I’ve been reminded of lately, is that teaching skills for independence makes things inconvenient for me…for now. Eddie has been working on taking his own leg braces and shoes off. Those plastic orthotics can be real difficult to work with, but we’ve been teaching him how to remove them. Now that the skill is mastered, his shoes and socks are abandoned every time he has a few minutes alone. This is inconvenient for me when we have to be somewhere fast and I have to get those suckers back on. A continual goal is to get Eddie to consistently use utensils to feed himself.


It's Back to School for My Child Who is Blind

Due to the chaos that surrounds back-to-school for all children, Eddie gets a bit of a jump start. Yesterday, about a week before school starts, he began attending for half-days to get reacquainted with school. He’s done this before, and it hasn’t always gone well. Some years, if we even mention school, Eddie protests verbally and physically. When I started talking about school last week, he simply said, “No.” One word pretty much wrapped up his thoughts on the topic. When he woke up yesterday, we were unsure how he would greet the day. Of course we talked about school the night before, and the days leading up to this moment. I think it


"Can't" Is Still Part of My Vocabulary

As a parent of a child who is blind, and as a teacher of the visually impaired, I try hard every day to disprove myths about blindness. I talk tirelessly to educators, peers, and other parents about all of the things people who are visually impaired CAN do, which is pretty much everything. I encourage all of my students to be independent, and push my son, too. However, I still keep saying that ugly word…“can’t.” This weekend, I spent time working with students who are visually impaired, and introducing them to a variety of recreational opportunities including using the tandem bikes pictured here from the NW Association for Blind Athletes. The camp


Accidental Pre-teaching

Camping has been something we’ve long enjoyed, but found difficult with our child who is blind and autistic. We’ve simplified the process by renting a cabin or a yurt, so that regardless of weather conditions and Eddie’s mood, there is somewhere he can be alone and have his required “quiet-time.” However, since we don’t own a camper, spontaneous camping leaves us with making the best of things in a tent. The first problem with tent camping is the zero sound barrier in those paper-thin walls. Campgrounds are typically very quiet. There are posted signs stating no loud noises between certain hours. My son is usually up by 4:00, and


Corkscrew or Scrambler? Labeling Matters for My Child Who is Blind

When you find yourself raising a child who is blind, you learn almost immediately how important it is to talk to your baby. Children with visual impairments need language constantly to explain their world around them. We learn to label every sound that stands out and everything our child touches. For somebody that talks a lot (like me), this was a pretty easy undertaking…which came quite naturally. Then, for some of us (again like me), we learn that our child who is blind has an additional disability. One that makes them upset when they get too much information, or confused when language becomes too complex. At that time, we are told not to provide too much language. Use less words…short sentences…lose the adjectives…get to the point, etc. To this day, I’m regularly


Respite Required

The definition of respite includes the phrase, “an interval of relief.” When my son who is blind was a baby, admitting that I needed any “relief” from caring for him was extremely difficult. He had some government funding that would have paid for “x” amount of respite hours every month. I hardly ever used it because I felt that I should be his only caretaker. When he was a few years older, I knew that I did need help, and I should have sought it out sooner. I had two other children then, was the stay-at-home parent, and I was exhausted. I would get worked up over little things and find an excuse to leave as soon as my husband got home from work. My oldest was in first grade, and her teachers were concerned because she was always on the verge of tears. Our family was no longer


Unexpected Surprises

From the beginning of our journey with Eddie, we quickly learned about unexpected surprises. As with most parents finding out their child was blind from birth, it was certainly something we didn’t see coming. Along the way, we have also learned that surprises come in all forms, good and bad, and that sometimes the bad surprises turn out to be good later on. Maybe most importantly, we learn that life is never in our control, and we must have faith or an understanding about that simple truth. The last few weeks, I think I’ve had my fair share of unexpected surprises. Due to being a perpetual student, I took two summer classes that were about law and finance as it pertains to education. I expected them to be extremely dull and a complete drag to attend during summer.


There Was a Time

There was a time I was expecting the birth of a little boy that would love me at first sight. Little did I know that sight had nothing to do with love. There was a time I thought you only took your baby to the doctor at 2 months, 4 months, 6 months, one year, 18 months, and every year thereafter. What I learned is that a doctor’s job is much more than that, and that they’d become a much greater part of our lives. There was a time I anticipated first steps, and being beyond the crawling stage where dirt is just a part of your life. Well, after anticipating crawling for over two years, and then first steps for another two years…I learned to stop anticipating and to enjoy every stage no matter how long it lasted. There was a time I thought kindergarten meant


Differentiation at Home

Differentiation is one of those big words heard all the time at school. Basically, it means adapting a lesson in a variety of ways so that all kids can learn, even those that learn differently. This actually can make something meaningful for a student who may not be ready for the whole concept at once. Well, this past weekend, I’ve been applying this concept at home. Instead of adapting lessons, I’ve been adapting activities. In the summer, Eddie (my son who most readers know is blind and autistic) has a pretty hard time. Unsure of what to do with so much free-time, he gets easily bored with his preferred activities. Most 9-year-olds live for the freedom of summer. There are adventures to be had, new games to play, and sunshine to enjoy. Well, I don’t think Eddie


Another Family Learning Weekend

It has been an extremely busy end to the school year. Meetings with my son's school, end-of-year programs, and additional family activities have kept us running. Of all that's been going on, the greatest time was had at the Montana School for the Deaf and Blind a couple weeks ago. We had the opportunity to attend a fantastic event. All five of us made the trip, along with my sister. In the past, we lived in Montana, and regularly attended the Family Learning Weekend, which was open to families within the state that were raising a child who was visually impaired. They provided hours of training for parents, and time to visit with families just like ours. During that time, our


Seasons Are Changing for My Child Who Is Blind

As we move from spring into summer, I’m noticing that the seasons aren’t the only thing changing in our house. Our son is also moving forward in ways that seem monumental. He seems to be having a growth spurt in relation to independence, communication, and overall ability. The first thing we noticed was his sudden knack for running his CD player. He still isn’t loading and unloading it, but he is operating all the keys and for the appropriate function. Instead of throwing a tantrum or tracking us down every five minutes to request, “Change song, please” he’s doing it on his own. Along those same lines, he suddenly became interested in the keyboard that’s been set-up in his room for three years. He always has occasionally tinkered on it, but now he is


Sensory Awareness for My Child Who Is Blind

A couple weeks ago, I was at a training pertaining to children with visual impairments and a concept was brought up by the instructor that stuck in my head. It was the phrase “Sensory Hell.” This concept was used to describe where our children sometimes find themselves. Well, I’m pretty sure I got a first class ticket there myself last Wednesday. I was at the dentist, and as I sat in the chair, I was totally overwhelmed with sensory information. I was listening to the sound of the tooth polisher, the technician’s attempt at conversation, and also the sound of the drill in the room next door. I had fluorescent lights shining down on me, and thin glasses that barely shielded their glare. I had somebody else’s hands in my mouth, moving my cheeks from side-to-side, and


Mother's Day Weekend with My Child Who Is Blind

In church yesterday, the discussion turned towards a mother's suffering, and how regardless of what children we have, or the lives we lead, there will always be times when a mother suffers. I waited for the typical ending where it is said that no matter what suffering we endure, our children are always worth it...but that actually never came up. It was a message of simply, “Thank You” to all mothers for the difficulties they face. As a parent of a child with multiple disabilities, there are certainly times I feel like I'm suffering, and I just want to suffer...without having to add any disclaimer. It was sort of refreshing to have that justified in a way. I already was feeling guilty on Mother's Day because of my request for a gift. I had asked from my husband that I


Feelings of Isolation for Parents and Their Blind Child

In April, my father-in-law passed away after battling cancer. His presence in my life, and the life of my family, was one of great importance. Although I realize that the passing of a loved one is not unique to me, the sadness I feel can be very isolating. As I went back to work and my daily life, and found myself among people that didn’t know him, I carried a burden that seemed solely on my shoulders. My father-in-law was always on my mind, and there was rarely anyone readily available to talk about him when I needed it. The only time I felt somebody could truly relate to my feelings was when I was with my husband, or his family, or others that knew and loved him. Of course, as life often does, this brought me back to thinking about the isolation of raising a child with


A Simple Birthday for My Now 9-Year-Old Blind Child

I know what I like about birthdays, and I really know what Eddie’s sisters like because they never stop telling me. What I don’t always think about is what does Eddie like? Instead of focusing on what birthdays normally look like...I focused on making it all about Eddie. Step 1: Birthday Breakfast. This is a tradition in my family. Instead of having a big dinner and opening gifts at the end of the day, we open gifts first thing in the morning and enjoy our favorite meals. Everyone always pushes for pancakes and waffles, but not this year. Eddie loves eggs and ham, so that was the main dish. Forget the syrup...and bring on the protein! Step 2: Gifts.


Struggling with Identity for My Child Who is Blind

Not long ago, I wrote about discussing blindness with children who go to school with my son, Eddie. I wanted to portray individuals with visual impairments in a positive light. The problem was…I was creating that identity, and certainly not speaking from personal experience. I’m a parent of a child who is blind, but I’m not visually impaired myself. I openly admit that I don’t know what it is like to be blind; I can only speak from other people’s experiences. I can say that I know someone who is blind and an attorney…or I know someone who is blind and has a family…or lots of people that I know who are blind like to use iPhones. These are not my own accounts, but still somewhat reliable. The reason they have some validity, is because I learned these things from


World Autism Awareness Day 2014: What I LOVE and HATE about Autism

I began to write for FamilyConnect not because I’m the parent of a child who has autism, but because I’m a parent of a child who is blind. However, both factors affect our lives daily. In honor of World Autism Awareness Day 2014, today I’m addressing this piece of the puzzle that makes up my son, Eddie. I LOVE that Autism has allowed my son to slowly progress through the stages of life. He was an infant longer…a toddler longer…and therefore, I was gifted with extra years of snuggles and lap-time. For him, I will probably never say he grew up “too fast.” I HATE that Autism makes him progress slower than his peers…and that he’s never quite


Discussing Blindness with Sighted Peers

Recently, my ten-year-old daughter’s class read the story of Louis Braille in their reading textbook. Naturally, being a teacher of the visually impaired, and a parent of a blind child, I really wanted to talk to her class. Luckily, my daughter didn't mind that her brother would inevitably come up. She asked her teacher if I could come in, and her teacher willingly agreed…seemingly excited to have me as a guest. My first question to this fourth grade class was, “Does anybody here know somebody who is blind?” Most of the twenty or so kids raised their hands. I then said, “Please put your hand down if you’re thinking of Eddie.” All but two kids put down their


The Good, The Bad, and The Sheer Desperation of Trying to Include My Special Needs Son

In my last posting, I brought up the “ah-ha” moment when I realized my son probably did want to be included, but struggled with it constantly. There are many ways my son plays with the family, but there are three times as many activities that are difficult to include him in. Recently, I’ve been working on that, with good, bad, and desperate results. Last weekend, Eddie’s sister had a two-day basketball tournament. Eddie and I decided to go, and it included an overnight at a hotel. What we’ve learned this season is that Eddie doesn’t like loud, unpredictable cheering. Every time a team scores, he goes completely crazy. Yelling, hitting, kicking, stomping, and waving his arms in the air. Knowing this, I thought I was prepared. I had headphones, snacks, and we sat by


Is Being Alone Really What My Blind Child Prefers?

Eddie loves to play in his room. He loves to spin for hours in this cushy rocking/ spinning chair. He enjoys having his radio queued up to his favorite tunes, and a toy provided that preferably makes a lot of noise, or works well for percussive purposes. He requires gum for this time, and after it is provided, he will promptly say, "Goodbye." My son has been this way for most of his almost nine years. Once mobile, he would often leave any room with people, seemingly seeking out an existence in solitude. He knew what he liked to do, where he could find his favorite things, and didn't seem to want company. Overall, this has made him appear easy-going most of the time, and a pretty easy kid to babysit. In many meetings, I have sat and declared that Eddie preferred to


Eddie's Struggles with Braille

Over the past few years that I've been writing for FamilyConnect, I've brought up the topic of braille multiple times. It is a constant in my life. Due to Eddie's visual impairment, he simply can't access print. For him to read independently, he has to learn braille. The problem is, and has been for quite some time, that Eddie simply hasn't been that interested in Braille. Since infancy, we have provided him with braille throughout his environment. Household items were labeled in braille, he had a plethora of braille books, and because I'm a teacher of the visually impaired, he is able to witness me writing braille frequently. We purchased a brailler for him early on, and hoped that like our sighted children, simple exposure would build interest. Eddie is slightly


Patience: A Necessity When Raising a Child Who is Blind

Last week, I was in valentine preparation mode. Because I am not running for mother-of-the-year, I had my daughters pick up their favorite cards from the nearest store. For Eddie, I went to my easiest braille option, the National Braille Press. They make the best braille valentines, ready to go, with decoding information on the back for his sighted peers. I was proud of myself for ordering them in plenty of time, getting the names brailled on last weekend, and sending them off in his backpack straight to his classroom aide days before they were due. I was on top of things…or so I thought. Two days after I sent those valentines to school…TWO DAYS…I thought, “Oops!” What part did Eddie have in that process? Absolutely none. He didn’t even put them in his backpack


A Place for Blindness and Autism

In my personal life, discussing disabilities is resigned to mostly family. When I’m with my friends, it’s hard to discuss blindness and autism and how it affects me, Eddie, and our family. When I’m sitting on the bleachers at my daughter’s basketball game, and someone asks about Eddie, I often say, “He’s OK.” Or maybe I’ll swap out “OK” with another generic adjective like fine or good. Then, I’ll quickly change the subject. The reason I don’t typically go into too much “Eddie” detail is because my daughter’s game isn’t really the place. I spend a lot of my time NOT discussing blindness and autism, because it isn’t fair to my friends. They want to talk about the things we have in common; children in the same classes, the local sports, and who’s going to book club. Those are


Super Bowl vs. Twinkle Twinkle: What Do You Think My Blind Child Prefers?

A couple weeks ago, I was putting my son to bed and looked around for a great bedtime story. We have print-braille books that I like to read to him, and most days he likes to listen. However, we’ve read them all a few times, so I was looking for one I’d forgotten about. What I found, was a blast from the past. About three years ago, we moved from Montana to Washington State. When we moved, my son left behind his pre-school, which he had attended for three years. There was a teacher and two classroom aides that saw him through his entire preschool journey, and they wanted to send him off with a special keepsake. They picked up one of those recordable books from Hallmark, and took turns reading as it recorded their voices. The book they selected was called,


It's Mostly about the Future

I recently had a discussion with a friend who also has a child with a visual impairment. Her child is an adult now, but I find that we still have much in common. While talking, she asked me a question that I hadn’t thought much about, but now can’t get off my mind. She was wondering if it was harder for me to get the diagnosis that my son was blind…or if learning that he was autistic was more difficult. Immediately, I could say that his diagnosis of Autism was harder to take, but it took me a minute to articulate the “why.” What I quickly realized was that the reason the autism diagnosis was hard to hear, was because it’s mostly about the future. When Eddie was diagnosed as blind, he was four months old. He had some minor medical problems at birth, so I really


Talking Larry Saves the Day

This time of year seems to drag on. I know, it’s only been a couple weeks since the holidays, when we all complained about being TOO busy…and now I’m complaining about having nothing to do. I just see a few months looming ahead with cold weather, lots of inside time, and hours when my kids will need to be kept busy. My daughters entertain themselves very well, but Eddie is another story. I think that finding hobbies and activities for kids with visual impairments can be kind of tricky. Many of our kids’ peers enjoy TV, video games, board games, etc., and some of our kids who are blind may enjoy the same things. All they might need is a little bit of adaptation or instruction so they can enjoy that stuff at the same level. However, my son Eddie, who is eight but


Show and Share

Due to having a kindergartner in the house, a topic covered every day is “Show and Tell.” However, in my daughter’s class, it is now called “Show and Share,” which I guess is more polite. When we went on our recent family vacation, she asked at least every four hours, “When will I have Show and Share?” Then, she would continue explaining all the things from our trip she wanted to present to her class. Since Eddie is minimally verbal, due to Autism, he doesn’t ever share anything with anybody. In a post I wrote awhile back, he shared his dental worries with us, but that was the first time he ever “shared” anything. Since our recent trip to Disneyland was quite an adventure for him, I wanted him to be able to tell others about it. <img


Why Those Dots Are Important to Me

January 4th is a much celebrated day in the world of visual impairments. It was Louis Braille’s birthday, who was born in 1809, and of course invented braille as a means to literacy for those that were blind. For almost two centuries, his work has made a difference in the lives of many that would otherwise remain illiterate. When Eddie was diagnosed with blindness, I immediately became curious about braille. How did it work? Where do you get braille books? Is it hard? Who will teach it to my son? What do you use to write braille? The questions just kept coming, and very patient educators kept answering them. As Eddie got older, and it was determined that he had multiple disabilities on top of his blindness, I wasn’t sure what that would mean for reading & writing. I


Family Vacation: Survived, Conquered, and… Enjoyed!!!

Our ten-day whirlwind road trip covering about 2900 miles has come to an end. We celebrated my Mom’s 60th birthday, our 12th anniversary, and Christmas in Disneyland. Due to Eddie’s special needs, we put this trip off longer than intended, and still weren’t sure how it would all turn out. In relation to Eddie’s visual impairment, we really had no concerns. Disneyland, and any vacation, typically have something for all the senses, and his lack of vision was not going to hinder his enjoyment. However, his needs related to sensory processing issues had us standing on end. How would he handle so many hours in the car? How would Disneyland affect him? What would it be like staying in hotels night after night? Let me address that last question first…the hotel stays were


Hitting the Road

At this moment, I’m questioning my sanity. It’s the night before we begin the longest family car trip we’ve ever attempted…and I still have so much to do. In Anne’s recent post, which I hope you’ve read, she explains that moms of special needs kids need to give ourselves a break…and, sadly, that’s not exactly my plan this Christmas. Last year, we didn’t leave the house for a week. My husband built a homemade luge track in the front yard, and the kids were entertained by snow and sleds for days. Family came to us, and we spent all Christmas day in our PJ’s. Doesn’t that sound heavenly? It was. This year, way back in February, we promised the kids a destination Christmas. My mother, their grandmother, was turning 60 just after Christmas. Where else would she want


Conquering the Fairy Godmother

If you have a child with a visual impairment, you may have been warned early on not to become the “Fairy Godmother.” We so much want to provide for our children, and give them everything they need. Unfortunately, this often harms kids with special needs and blocks their chance of processing their own world. For example, say your sighted child asks for a cup of milk. Inevitably, you will get up, walk to the fridge, pull out the carton, get down a glass, unscrew the cap, pour the milk, and happily hand it to the child. For the sighted child…they just took in the entire process of getting milk in one short moment. If they had the strength to lift the carton, they could now get milk for themselves. If your child has a visual impairment, like my son, Eddie, that whole


Being Thankful

I’m going to share a little secret that is often hidden by my mostly positive writing; raising a child like Eddie is pretty hard. Multiple times a day an overwhelming feeling of anxiety starts to build, and I do my best to block it, but it is always there under the surface. I could easily focus on the struggles he faces every day…and the fear that I can’t help him. Honestly, sometimes I can’t help but focus on that…but not today. Today, I’m focusing on being thankful. I’m thankful for his ridiculously contagious laughter, which comes out of nowhere, and makes us wonder if he’s possessed. I’m thankful for his hugs, and air kisses, because he’s never quite patient enough to make it all the way to my cheek. I’m thankful for his willingness to use a white


Gift Ideas for (Slightly) Older Kids

I look at this picture from last Christmas and wonder, “How can it already be that season again?!?” Every year, literally every year, I am asked to consider Christmas gift options for my visually impaired son. Friends and relatives are looking for a great idea that Eddie would enjoy. As a parent, I’m more concerned about what Eddie needs. Most days, due to developmental delays, Eddie doesn’t communicate what he wants; however, I’m always aware of what he needs. Eddie needs to be more independent. He also needs more activities that incorporate sensory stimulation. He needs more physical activity, and needs social interactions with peers.


Making the Most of It

Every year (or more), we have to travel across our state to visit some of Eddie’s doctors. When he was a baby, we decided that a little driving for some expertise was always going to be worth it. So, we have managed to keep him with the same specialists over the years, no matter where we live. This time, since it came at the front of a three-day weekend, we decided to make a family trip out of it. We have many relatives near his doctors, and we always have a place to stay. Also, we simply love to see them, so quality family time was great to fit in. If we were going to submit Eddie to further medical review, we might as well have some fun along the way. His first appointment was at the crack of dawn, so my husband took our daughters to breakfast during the


What CAN He Do?

My daughters always want to help me in the kitchen…well, not always. They like baking and helping make dinner, but not necessarily doing the dishes. Usually, that’s when they disappear. However, while cooking, they see me moving about and getting into all the cupboards and their natural curiosity draws them to my side. My visually impaired son, Eddie, is often drawn to the kitchen, too. The smells of dinner may bring him in, or simply the sound of cupboards opening and closing. To him, this all means that there is food happening, and he doesn’t want to miss out. The problem is, once he arrives and finds nothing is quite ready to eat, he


How Much Vision?

Children with visual impairments are often categorized by how much vision they have. Are they totally blind? Can they see light? What can they see? Can they read print...or do they need braille? Everyone wants the answer to the question, "How much vision?" Obviously the parents want to know, but so does every other person we meet...friends, relatives, educators, therapists, etc. When Eddie was a baby, he was categorized as totally blind. We were even told by his first ophthalmologist (whom we didn’t see very long) that he would never have vision, and we didn't need to see another eye doctor ever again. Eddie not only was diagnosed as totally blind, but he behaved like he had no vision as well. As he got older, we began to realize that he seemed to maybe have some


Separating Church and State

The separation of church and state has been a well-known concept since Thomas Jefferson was around. My understanding is this was written into the Bill of Rights to help people maintain their religious freedom. So they could hold their own personal beliefs, free from government actions or control. In my own life, with Eddie, I’ve had to do a little separating myself. As I’ve written before, I’ve spent the last few years being Eddie’s Teacher of the Visually Impaired (TVI). This was something I expected when I went back to school. I knew that if Eddie was always going to have services, I’d have to be certified to do it. Otherwise, we’d be moving to find teachers all the time. However, I found that being the parent and the TVI was often a paradox. I knew special


Babies Like Eddie

When I was younger, before children, I was terrified of little kids and especially of babies. As a teenager, I rarely babysat anyone. I chose to work as a restaurant hostess, and a hotel maid, instead of changing diapers and putting children to bed. When I went to college, I chose a degree in teaching, but stuck with secondary education. I student taught eleventh grade history, staying as far away from elementary school as possible. I just didn’t know how to interact with kids, but after I had my own, that changed. Many of us know how fantastic it is to hold a newborn baby. Once we’ve been through it on our own, we know that they simply want affection. If you can offer that to them, they will snuggle right in, and sleep easily in your arms. Like many moms, I often


Always Hunting

Because I have a child with a visual impairment, and multiple disabilities, I’m always hunting. Often, it’s for anything that will improve Eddie’s life, no matter how big or small. This could mean the perfect pair of elastic-waist jeans, because some would call him well-fed…AND buttons are still a problem. More likely, I’m hunting for something a little more complicated. At the moment, I’m hunting for a new diet for Eddie. This is not only because of the “well-fed” issue, but also because he has many digestive struggles. I’ve consulted doctors, friends, relatives, and other parents of children with special needs. I’ve read books…and walked the aisles of many grocery stores. Sadly, this hunt won’t end with someone handing me the perfect answer. The hunt will simply continue


Oh, the Irony

Yesterday, I did a little ranting on this website about the problems with assessment. I shared the anxiety I feel as a parent, and my fear that the “system” will let my son down. In the middle of my posting I went as far as to say, “What’s the point?” Well, I went to work today…and in the midst of struggling with how to work with a few particular kids…I went on a massive search for a great tool. What kind of tool you may ask…an assessment tool of course! As I was talking to other professionals about how to accurately measure a student’s abilities…a light bulb went off. Oh yeah! That’s the point! I knew that. As a parent, I want to protect my son in bubble wrap and allow everyone to see him through my eyes. I see the good, the bad…and sometimes ugly, but I see it


Fairness in Assessment

Eddie is up for his three-year reevaluation at school. This is required to continue serving him as a special education student. It also gives the district teachers and therapists an idea of where he’s at, and what they should be working on with him. If done well, the process can be a great point of reference. Of course, I’m not worried about it being done well. What I’m worried about, is if it’s done poorly; or even worse, if it is an unfair measure of my son’s abilities. As we know, an assessment is a snapshot of how a child is doing on one day…and at one point in time. For a child with special needs, every day can be completely different. I’d say Eddie has at least four personalities. Happy Eddie wakes up smiling and laughing. He can’t even maintain focus


People That Get It

I’ve been spending the last month on a little bit of an emotional roller coaster. When I’m at home, spending time with my family, in our typical “routines”, everything feels OK. However, when I try to be a part of our community…and try to fit into the mold of society, I can become almost panic stricken and overly emotional. My husband pointed out that it is easy to forget the many ways that Eddie is different within our own lives. When we are confronted with the lives of many other families, and try to be a part of their world, Eddie’s differences seem exponentially bigger. Lately, for the sake of my own sanity, I’ve been seeking out people that get it. This can mean special education teachers, teachers of the visually impaired, and pediatric therapists. All of


He Simply Shared

The end of summer has meant an onslaught of appointments for Eddie and us. We intended to have all this messiness taken care of before school started, but of course that didn't happen. Why do I think I have control over anything? Out of everything scheduled, the greatest medical endeavor was going to the dentist. Eddie had been going to a pediatric dentist over the past year, that I'm pretty sure did absolutely nothing. Eddie wouldn't simply lie down and open his mouth; so, they did a quick peek...tried to brush...and called it "good." Recently, they admitted their shortcomings and referred us to another office that would use anesthesia, which Eddie had done before. At the consultation, we decided that Eddie would be "put under" and they would get x-rays, clean his


What DID I Say?

In my last post, I mentioned that I spoke to Eddie’s class. After that post, a friend asked for more information. She said, “So I want to know what you say to the kids? What about his visual impairments and sensory issues?” So, here is the bulk of what I talked about… for those that are curious…and for those considering sharing in their own child’s class. First up, because his blindness is the most obvious and interesting to the kids, I talked about that. I read them a book called, “Some Kids Are Blind” by Lola Schaefer. It’s a very simplistic approach…that addresses braille, canes, technology, guide dogs, and ways in which they are like all other kids. It also mentions how kids can become blind. This information always brings the question, “How did Eddie become


2nd Grade Begins

Well, Eddie started another year of school. Every year brings new teachers, new expectations, and new fears. Our year started with a three-hour planning meeting involving a special education teacher, a paraprofessional, an occupational therapist, a speech therapist, general education teachers, myself (parent and teacher of the visually impaired), and the school psychologist. Even though it was daunting, it was fantastic that they all agreed to meet before day one. One of the areas we discussed was how to involve him in his 2nd grade classroom. Most of his day is spent in a self-contained room, which often is most appropriate for him. However, we do like him to be considered as a peer to the other second graders. As I’ve discussed before, I like the class to “own” him to some


Sharing Information

Sometimes when you have a child with a disability you have to seek out assistance. This can be in the form of childcare, or someone to lean on for emotional support, but most often it is in the form of money or services. Kids with visual impairments, and any impairments, require a lot of extra help that other kids don't need. We have recently found ourselves in a position where we need to allocate more benefits, even though we do have health insurance. This has led to me sitting down with a state agency and applying for additional funding and services. When they asked what Eddie needed, I replied with, "What do you got?" Seeking financial and medical support always feels a little depressing, but if Eddie needs it, I can't not try to get it. Just like most agencies,


Recreational Opportunity

This weekend, I was blessed with a chance to spend time with multiple pre-teen youth who are blind or visually impaired. My first goal was to allow them to interact and simply spend time with peers that faced similar challenges and successes. Other goals included working on daily living skills, and learning about another recreational opportunity for individuals with visual impairments. In our area, I recently learned that we have a beep baseball team. The team consists of people who are blind or low vision of all ages. Previously, the only sport I knew much about for blind athletes was goalball. I was so excited to learn about another opportunity for our kids to be active. Beep baseball is an adapted form of the traditional sport. It consists of a ball that is


Career Education...Already

A couple years ago, when Eddie was not quite five, I attended a session at a conference on the Expanded Core Curriculum. This is the education that children with visual impairments need outside of the core curriculum. If you’ve never heard of it I suggest you find more information at http://www.familyconnect.org/parentsite.asp?SectionID=72&TopicID=382. One part of the Expanded Core is career education. At this conference, the presenters found it upsetting that more parents of VI kids weren’t concerned about this. At that point, I honestly had it ranked last in my own order of importance. Since my son was so young, I was more concerned about toilet training, language delays, and his inability to walk. I really felt that career education was something to worry about later…much


There Are No Secrets

As some of you other parents may relate to, having a child with echolalia means having no more secrets. Many children with visual impairments do have a speech disorder called “echolalia,” which means they repeat what they hear usually right after they hear it, but sometimes it will show up much later. For example, if I ask Eddie, “What would you like?” He’ll respond with, “What would you like?” We can go on like that for minutes in what sounds very much like Abbott and Costello's "Who's on First?" bit: Me: “What would you like?” Eddie: “What would you like?” Me: “Do you want gum?” Eddie: “Do you want gum?” Me: “I…” Eddie: “…want gum.” Me: “Say the whole thing.” Eddie: “Say the whole thing.” I think


Surviving the Home Stretch

Time at our house is often spent in chaos; a random succession of events occur throughout the day. Friends stop in unannounced…the neighbor kids come to play…TV’s are turned on and off…and food is offered when convenient or requested. As you can start to understand, we have no routine. Even though that works for the majority of our family, it doesn’t work for Eddie. We try to establish some kind of routine for him, but we can’t make the rest of our family predictable. Eddie does have a good morning routine, and he gets meals at about the same time every day, but outside of that he really doesn’t have an event planner. Obviously, school is much better suited for organization and schedules. No matter what school you attend, you can expect a tight schedule. Bells ring at


Tough Questions

In all of our lives, there are usually one or two people that always ask the tough questions. They are simply incapable of taking things at face value, and want to know how we REALLY feel or the absolute truth. That person in my life is my youngest daughter, CC. She will be turning five this week, and is one of the most perceptive people I know. Actually, she reminds me of Pollyanna. For those that have never heard that story, it is about a young girl who is “glad” all the time and brings happiness to those around her. CC is a little bit like that. Every lap is her home, and she seems to have an infinite amount of hugs. In fact, she can almost sense when I need a hug, and seeks me out when I’m feeling down. She usually even brings Eddie's tactile symbol for "hug."


Unconditional Acceptance

This week we lost my husband’s grandmother to cancer. Above all else, she was a fiercely devoted matriarch. So strong was her family dedication that she greatly intimidated me when I joined the Coleman family. I knew that if I did anything wrong by her grandson, I’d have to answer to her. That alone was enough motivation to keep our marriage on track. When I was pregnant with Eddie, and we learned I was carrying a boy, I honestly felt proud. Eddie was the first boy of his generation, and would be the first great-grandson for James’ Grandma. I realize this is extremely old-fashioned, and I don’t mean I value his sisters any less, but there is something simple about having a boy. That simple thing is the possibility of carrying on the family name. My expectations for


Just Right

Since Eddie’s blindness diagnosis, he has regularly had a speech, physical, and occupational therapist. Once he entered school full-time, we backed off on much of his private therapy. This was partly because he was getting services at school, but also because we moved states. This left us with fewer medical financial resources, and also with the task of finding new therapists. Prior to our move, we were blessed with providers that were really rooting for Eddie to succeed. Every single one of his gains was celebrated weekly. Not only was Eddie encouraged, but so was I. I was given pats on the back whenever we met, and basically felt like Eddie could and would succeed at whatever goals we set. Since our move, I feel like we have been without a cheerleading squad.


Tastes Over Time

We all have certain musical tastes that inherently change over the course of our lives. For example, even though there was a time that I loved a boy band literally called, “The Boys”, that is no longer my music of choice. Eddie's musical palate has changed more in his eight years than mine has in my thirty-three. As an early lover of music, he was an extremely picky newborn, and continues to be picky to this day. As a baby, we had a CD player inside his crib to help soothe him. If you've ever lived with a newborn, you know that you will search far and wide for whatever the magical remedy is for sleep and lots of it. We found out when Eddie was only four months old that he was in love with Norah Jones. I did get a Norah Jones CD when I was pregnant as a gift, and


Rough and Smooth

Some of the MANY things that you have to convey to a child with a visual impairment are the differences in textures. In working with their canes, they develop a lot of directional concepts like up/ down, left/ right, in/ out, etc. In learning how to read braille, they have to understand how things feel and learn how to discriminate based on touch alone. There are some teaching tools from the American Printing House for the Blind that can be used in the classroom. During the summer, I like to find textures within the environment. A recent trip to the coast led us to some great teaching moments. My in-laws live near the ocean, and we were in their area for a week visiting all of our family. While in town, we decided to do some “adventuring” to mix things up a bit. Our


Looking Ahead

I’m beginning to realize how easy it is to get stuck in the present. Our family goes about each day in our own typical fashion. I expect things from Eddie that I know he can do, but I forget about the things I want him to learn. Some behaviors, and poorly learned habits, are overlooked because it has become what others have called our “new normal.” I don’t even realize some of the areas he needs greater skills, because I easily accept him for who he is today. I forget to look ahead to tomorrow and where I want him to be. When I forget about tomorrow, I simply let Eddie “off the hook” and don’t show him that my expectations for him are high. At school, during the IEP meetings, we talk about goals for hours. We disagree and agree with teachers, we discuss our own


To Include or Not to Include

The end of the school year is filled with many different opportunities to step outside of the educational box and simply have fun. Field trips are scheduled, performances are planned, and parties are enacted. For every opportunity in Eddie's life, we have to consider whether he should be included, or not included. In May, Eddie's 1st grade classmates were going on a field trip to a farm. When we heard about it, we knew Eddie had to go. What could be better than touching farm animals and smelling the fresh (?) outdoors and discovering all that farms have to offer? Eddie walks to school, so even the prospect of riding a school bus sounded like something Eddie would like. We wanted him there, and his school made it happen. The next function wasn't so easy. Eddie's


Signs of Growth

In the world of parenting Eddie, nothing ever seems normal. A family outing, a parent-teacher conference, a visit with relatives, and even watching T.V. have a twist to accommodate my son. When Eddie is involved or included, nothing would be considered “normal” by anyone peering into our lives. I’m not saying bad…just not…typical. This is even more obvious when you track Eddie on a daily basis as we do. We know that he measures the things in his life on a different scale. We know that his joys are irregular and his upsets are unpredictable. We know that he isn’t comparable to his peers in most ways. Because we are so aware of all the things that make him different, it completely throws me off guard when something happens regarding Eddie that is typical. When Eddie


That Wicked Kitchen

Due to multiple medications, and lack of physical activity due to an orthopedic impairment AND laziness…our son, Eddie, is always at risk for obesity. He puts on pounds fairly quickly, and doesn’t lose them quite so fast. Even though he has not yet become overweight, the chances for him are much greater than for other kids. The main thing that really increases his chances of excessive weight-gain is that he LOVES to eat. When given his “choice board,” he would pick “snack” all day if we didn’t intercede. We have to quickly hide that choice after every meal or snack so he doesn’t immediately request it again. The great thing is that this is a situation we can control, and we do. We have yet to take control in other areas that need attention. We have pushed Eddie to


Mother-Son Night

Our kids’ elementary school has a bi-annual event where the kids get to bring one of their parents. Last year there was mother-daughter night; followed by father-son night. (Eddie and his dad missed it last year due to illness.) This year, there was father-daughter night in the fall, and mother-son night this spring. I of course knew the event was coming, and debated whether or not to attend. All of these events include games, an opportunity for pictures, and finally…cake and punch. I knew that of all the choices, Eddie would only really enjoy the cake. This is what had me wondering if it was worth attending. It came down to one question…if Eddie and I went, would it be for me or for Eddie? If I’m going to be honest, it would be mostly for me. After coming to that


Simply Sad

Because I recently stated to friends that Facebook is really only snapshots of the best days of our lives, I feel that I need to make this blog a little more realistic than that. I love that Facebook gives us a platform to share special moments with our family, or to share a favorite recipe or book. However, have you ever noticed that when someone posts something sad, or even depressing, it can simply be awkward? Like reading a diary? Well, get ready for feeling a little bit awkward. I need to admit that I’m writing today on a grand total of two hours of sleep. I guess that is reason enough to feel sad. That lack of sleep was due to my son, Eddie, being up all night moaning and crying with no explanation. Again, that is reason enough to feel sad. He also continues to tantrum


Recreation?

Warmer weather has arrived in full force around here. Inevitably summer is on the way. This means no school for the kids and lots of free time around the house. Hours...and hours...and hours...of unallocated down time. Does that freak any other parents out, or just me? My two daughters have no trouble passing away the time riding bikes, playing video games, occupying the swing set, playing in the sprinkler, etc., etc. However, for Eddie, my child who is blind, it can be really difficult keeping him happy all summer long. During school, his day is regimented into perfectly sequenced activities that keep him busy, learning, and entertained. That just doesn't happen in the summer. I understand the importance of routines, especially because he's autistic as well as


Shifting Focus

This week, I was able to shift the “blind” focus away from Eddie a little bit and move it to his older sister, Molly. Typically, when it comes to Eddie’s disabilities and significant needs, his sister isn’t too involved. She is aware of his needs to an extent, but has her own life and her own hierarchy of needs that don’t have much to do with Eddie, which I think is healthy and appropriate. However, this week she got immersed into his world, via indirect routes. April 25th was “Bring Your Child to Work Day,” and I opted to bring Molly along with me. As I’ve mentioned, I’m a teacher of the visually impaired. I work as an itinerant, meaning I travel between a variety of schools and districts on any given day. I thought it would be great for Molly to tag along to see what it is


Eddie Turns Eight

Another year has passed since I wrote the captivating piece, "Mr. Eddie Turns Seven." Sarcasm aside, it is amazing how fast the time goes. I'm sure we all feel ourselves racing against the clock in our personal lives, but that feeling grows ten-fold when you have a child with a disability. As another year passes, we find ourselves celebrating the successes, of course, but also terrified at how big the list has gotten of the goals yet to be met. Another year forward means another year lost towards "catching up" with peers. When he was a baby and I was told that Eddie has Optic Nerve Hypoplasia, I was also told that Eddie would likely "catch up" by the time he was seven. This is a very optimistic opinion that I clung to, and is true for some children with his diagnosis, however


Reading the Signs

Recently I was visiting Eddie at his school, and he was having an abnormally rough morning. I noticed when he awoke that day he wasn’t thinking at his typical speed. When asking him simple questions he usually responded to quickly, he couldn’t come up with an answer. You could see the wheels spinning, but his thought train was not moving forward. This foretold of a potentially bad day at school. So, when I showed up to work with his teachers, and to discuss his braille progress, I thought I probably wouldn’t get much work out of him. We started by heading off to his regular education classroom, which he does each morning. While going down the hall he tried to enter his classroom from last year. He was adamant about revisiting kindergarten, and threw a tantrum when prompted to


Flashback

I was recently asked by another mom raising a child with a visual impairment about when we were first given our son’s diagnosis. She was interested in what it was like for us in the beginning. Because this is Eddie’s birthday month, and I’m feeling nostalgic, I feel like a short summary is in order. As with all parents raising special needs kids, our story is unique, but I’m sure will sound oddly familiar… When Eddie was born, he was over a week past his due-date, and weighed in at almost ten pounds. At first, things seemed mostly normal, but within hours he developed some medical complications that required us to be transferred by ambulance to the nearest NICU (neonatal intensive care unit). We stayed there for almost three weeks. This original medical struggle had to do


Lessons Learned at the Beach

This past week was Spring Break for our family. We headed out on our 2nd annual beach camping trip. Like last year, we stayed in a yurt to secure dry, warm conditions in case it rained. Since we were staying at the ocean in April, rain was inevitable, and we wanted to be prepared. Here are a few lessons I learned during our trip: 1. A wide-open, sandy beach is perfect for traveling blind. Eddie was able to use his cane with reckless abandon and wasn’t at risk of hitting anyone or colliding with large obstacles. We had a chair for him to rest, but he would spontaneously rise up and walk in large circles singing and dancing at whim. We could be yards away and knew he was perfectly safe to explore and enjoy the beach. 2. When all goes south, find the nearest pizza and/


More on Choices

A few posts back, I talked about choices and how we made Eddie a tactile “choice board.” For children that have communication delays, we have to give them some control over their lives. Imagine if you were starving, or were thirsty, but you didn’t have the words to tell anybody, and you didn’t know how to take care of it by yourself. Personally, I would quickly find myself demonstrating “problem” behaviors. Therefore, it is no wonder that Eddie has some behavior concerns. By giving him choices, he is able to make some decisions about what he would like to do in the time he wants to do it. I don’t have to keep presenting him with ten ideas and hope I hit on exactly what he needs and/ or wants. Even though the choice board is great for that, I also try to give him choices


Special Needs = Special Products

When you have a child with special needs, you can’t simply walk into Toys R Us and pick up the most popular toy and know that your child will love it. This is not a news-flash for parents of special needs kiddos. In that same regard, teachers can’t pick up a catalog and select a curriculum tailor made for our children. Even teaching tools especially for kids with visual impairments cannot be counted on all the time. Especially if your child, like mine, has additional disabilities. This weekend, while attending a regional AERBVI (Association for Education and Rehabilitation of the Blind and Visually Impaired) conference, I had the opportunity to check out many of the latest devices and methods for children with visual impairments. I sat in many sessions that shared great


One for You, One for Me

If you’ve read my previous postings, you know that my son Eddie is blind due to Optic Nerve Hypoplasia, autistic, and has mobility issues. (Just FYI: he's also quite a character.) What that means for us in the scope of day-to-day living is that every task for him takes at least three times as long to complete. In reality, it can often take ten times as long. So, even though we talk about pushing him towards independence, it simply doesn’t happen all the time. Throughout the day, the little things we take for granted have to be treated like a mini-lesson. When we ask Eddie to even wash his hands, we have to remind him what each step is in that task, and then supervise and prompt as needed. This process that takes a minute for most, takes us five. Take this one thing that


Special Treatment

The last time I wrote, I explained a recent situation where we chose to ask for special treatment due to Eddie’s unique special needs. The comments I received were varied and brought up an array of new questions that I was asking myself. Should we do everything we can to give our children a boost in life? Should we ask for special treatment when we also ask for equality? As a teacher of the visually impaired, I want to expect Eddie to follow the same rules as everybody else. I want him to know that he isn’t the only child in the world, and that he also has to be respectful of those around him. I want him to be seen as a capable kid by his peers, instead of somebody that always needs assistance. In my teaching role, I see students and adults become overly helpful


Playing the Disability Card

I have had a hard time asking for “special treatment” for my son, Eddie. I firmly believe that we should push our children to be treated like other children whenever possible. To get equal treatment, we need to have equal expectations. For example, if I want Eddie to be treated like everyone else in a movie, he needs to sit quietly. If he is throwing a tantrum, or crying, or making a lot of noise, I don’t expect equal treatment. Instead, I expect angry spectators. (This is why we don’t go to movies yet.) Whenever we are out in public, I ask the same thing of Eddie as I do my other kids. He’s expected to behave, to speak when spoken to, and all the other basics of a polite society. If there is a line, he’s expected to wait in it, just like everybody else. I don’t want special


Learning to Wait

Children with special needs, whatever those needs may be, often need additional time to process information given and requested from them. This is therefore true for many children that have visual impairments. When we tell them something as simple as “goodbye,” they may need many seconds (or longer) before they process what we’ve said and respond with an appropriate “goodbye” of their own. This additional processing time is often referred to as “wait time.” Eddie certainly needs “wait time” consistently. When we ask him a question, we have to wait ten seconds or more before we can expect a response. This used to be much longer when he was younger. If we forget to be patient, and we re-ask the question, the “wait time” starts up all over again. It’s like the timer is reset


Continuing Education

From the moment you hear that your child has a visual impairment, you realize there is so much to learn and so little time. Yes, a cliché, but still very true. I felt like I wanted to get my hands on every book that had anything to do with blindness. I bought quite a few on Amazon, I borrowed whatever I could from any specialist my son saw, and I checked out anything at the library remotely related to vision loss. Once I had my stash of books, I was surrounded with knowledge and felt they held all the answers. Then, I found that along with holding answers, they could hold a lot of dust. Those books just sat on my shelves, on my end-tables, and on my desk for months on end. I looked at them every day and thought, “I should read those.” Then I thought, “Why aren’t I reading


Make a Choice

As always, communication is a huge hurdle when it comes to our blind son, Eddie. Even though his language has improved greatly over the years, he still struggles to get his message across. When he is overly upset, he simply can’t get his brain to talk to his mouth. His frustration escalates until he is screaming, crying, and absent-mindedly hurting himself or others. For children with vision, they often rely on their sight to help them communicate. First, as we see in toddlers, they will point to what they want. They may not be able to say “cheerios,” but they can direct you to the box and point at it. They literally control us with their little finger. Older children with delayed speech are often encouraged to use pictures to communicate. They are shown multiple


Quality? Time

If you read my last post, you are well aware that we recently had the stomach flu in our house. It travelled through most of us, which unfortunately included Eddie. He and I came down with the bug on the same day. I recovered in twenty-four hours, and Eddie just couldn’t snap back that fast. Eddie eventually got so sick, that he stopped drinking fluids of any kind, and we had to take him to the doctor, and from there to the hospital. Eddie is generally a healthy child. He gets minor illnesses easily, but rarely has to go to the doctor other than for routine care. He has been admitted to a hospital once before, and we quickly learned that because he has other medical complications, his labs are pretty funky. Therefore, doctors are fast to admit him, and slow to let him


Taking a Risk

A weekly event in my pre-children life was attending church. After we had our first, I continued going with her up until Eddie was born. She was only eighteen months old, and was still happy to sit in my lap with minimal complaint. After Eddie came along, my church attendance dropped greatly. Then, after we had our third, I pretty much only went to church for major holidays. When Eddie was little, I tried to keep up with church functions, and with friends I had through church. However, as we all know, having young children can be very isolating. Eventually, taking the kids to church seemed overwhelming. Even the thought of requiring them to sit quietly for an hour caused me anxiety. Aside from that, wrangling children during church took all of the spiritual meaning out of it


Sounds of the Season

Like many kids, my son is a sucker for Christmas music. Starting with the first blip of a holiday tune heard over the radio, he is literally addicted until January. He wanders the house singing carols all day long. If a radio, or holiday show on TV, is playing in any room of the house, he will track it down. Once located, he will sit, stand, or dance while listening to the sounds of the season. Eddie doesn’t seem to love every holiday song…and even has a love-hate relationship with a few key ones. For example, “Silver Bells” will turn on an immediate tantrum. Eddie loathes “Silver Bells.” All he has to hear is, “City…” and he is done. Through tears and screaming, we hear, “Change songs, please.” Then, we do it as quickly as possible. Eddie also expresses his


Gum...is...Everywhere

Eddie has some sensory deficiencies that are very common with kids that are blind and/ or autistic. One accommodation he makes is putting things in his mouth. This is sometimes to explore different parts of an item, see what something tastes like (sometimes food…sometimes not), or to bite down for some “sensory” input though his mouth and the muscles in his jaw. Last spring, while at an autism lecture, I heard about using gum as a replacement behavior for biting, chewing, and “mouthing.” I thought it sounded like a great idea. Not only could Eddie get some feedback through his mouth, which he often craves, but he can also be participating in age-appropriate behavior. What kid doesn’t like gum? So, this fall, we introduced him to chewing gum. At first, it was like


The Gift of Normalcy

Recently, our family had a festive holiday outing in our nearest city, and it left us feeling…normal. We put our three children in their precious holiday attire (Thanks Aunt Kristi and Uncle Frank!), paraded them onto Santa’s lap, cruised around the mall, enjoyed the tasty options provided by the food court, swung by the store on our way home, then enjoyed a nice evening watching a movie and drinking hot chocolate. All of this was accomplished over the course of many hours without one sibling blow-out, and without the uncontrollable outbursts that sometimes take control of Eddie. After the kids were tucked in, my husband and I looked at each other and were simply astounded. He spoke my thoughts as he asked, “Is this what being a normal family feels like?” This feat


Calling All Gift Ideas

How is it already December…again?!? Yep, it is the holiday season, which means many of us are purchasing presents for our children with visual impairments. I have searched high and low for the perfect gifts for my unique child, and have instead come up with some options that will work, but may not be absolutely perfect. I have stocked up on some new clothes, a few braille books, and sensory-stimulating devices. I have gone to my stand-by resources for children who are blind like the National Braille Press, Seedlings, and Future Aids. I even found some good buys on Black Friday. (Yes, I was a crazy person wondering the mall at 2:30 in the morning.) Sadly, I have yet to hear of a fantastic option for my blind, autistic son that he probably just couldn’t live without.


Giving Thanks

I’m not sure I’ve ever publicly given thanks to the many people in our lives that have been there for Eddie…and for us. I’m not very good at voicing my appreciation as often as I should, so in the spirit of Thanksgiving, I think I’ll speak up today in honor of Eddie’s staunch supporters. To our family: thank you for simply being there for us in whatever capacity is necessary. This has meant childcare for a weekend away, childcare for siblings while Eddie travels to doctors, a needed hug during a rough patch, slipping us some cash when life’s expenses were excessive, or a pat on the back when all is well. We have taken many risks knowing that we had you as our safety net, which has allowed us to say “yes” to any opportunity for Eddie. Even though it’s important to know we can


Doctor Travels

Due to Eddie’s medical needs, we typically have to travel 3-4 times a year see medical specialists. Every three months he sees a pediatric endocrinologist to monitor his medications, every year he sees his pediatric ophthalmologist to monitor his vision, and every other year he visits a pediatric neurologist to monitor his brain. Like many of you, I never mind loading up the car and heading anywhere to get the professional opinions that I value. Eddie has seen too many doctors that I either didn’t like, or that I felt were not giving him enough credit or minutes in their day. Unfortunately, in every profession, money is tight and time is limited. In the medical field, there can never be too much time given to our children. Last week, Eddie and I took a


What Is Your Perception of Blindness?

Before we know anybody who is blind, or find ourselves raising a child with a visual impairment, we have a preconceived notion of what it means to be “blind.” We hear stories from others, we watch people in the street, we see movies and watch television, and we read accounts in books of people who are blind. All of these images and concepts help us develop our perception of blindness. I know when I was less-educated, I felt that people who were blind were often helpless, and without a future. When I would hear of a person who was visually impaired doing almost anything, I thought it was “amazing.” “How amazing, they get their own mail!” “How amazing, they can ride the city bus all by themselves!” Thinking back, I’m embarrassed by how narrow my scope of blindness was, and how


When Is It Time?

One major question comes up constantly in relation to Eddie. It has been posed many times by me, his Dad, his educators, therapists, family, and friends. It appears in many contexts, within many topics, and in a variety of settings. This question, which you probably guessed by my title, is “When is it time?” “When is it time to start solid foods?” “When is it time to potty-train?” “When is it time to start school?” “When is it time to tackle camping?” You can see the list is endless and ongoing. Most children come with a built-in estimation of milestones. They’ll walk around one. They’ll lose the diapers around three. They’ll begin kindergarten at age five. Our children, children like Eddie, have to create their own timeline. There is


I'm Sorry

Eddie has been a child of few words his whole life. When he did begin talking, he used mostly echolalia, which means he repeated what he heard. This didn’t mean just copying words; but intonation, pauses, and even pitches. He still talks mostly this way, but will state phrases taught to him for certain situations instead of copying things he heard at random. This weekend, I was able to witness a bit more language that tore at my heart-strings. A good friend of mine and I headed out on a road trip to visit a mutual friend. We loaded up the car with all our kids (five in total), and headed to a neighboring state. The kids all did great in the car, and really all weekend. However, travelling in such a crowd had Eddie a little bit on edge. He was quick to be upset and


Miracles and Cures

Previously, I posted an article about other people’s perception when it comes to children with disabilities. Not only how some people tend to put their foot in their mouth, but also why they believe these children have differences, and where they think blame should be placed. In response to my blog posting, I received some wonderful comments from parents just like me. One such comment reminded me of the internal struggles I faced on the topic of religion. Like myself, I’m sure many of you have been approached about the power of healing, and that somebody was praying for your child to be “cured.” If you’ve ever read any portion of the Bible, you’ve probably seen many verses referring to the blind being healed, or somebody receiving the gift of sight. These verses are easy to


Some People

Even though this may be hard to believe, there are still some people in the world who think it is the parent’s fault if they have a child with a disability. Some believe the parents participated in risky behavior while pregnant. Some even believe that a past wrong or horrible deed done by the parents, have doomed them to raise a child with a handicap. Whether these inaccurate beliefs come from culture or religion, they can sting when voiced openly to those of us labeled. Last week, an offhand comment reminded me that there is much ignorance surrounding disabilities. I was speaking with a teacher, and she was commenting about another student with multiple disabilities. While looking at the child in her class, she stated that while pregnant she did everything right.


Just Hang On...Literally

As I’ve talked about before, when Eddie wasn’t independently mobile it was hard to introduce him to new things. He wasn’t seeking out new environments, because he wasn’t able to look outside of arm’s reach. Therefore, everything he explored was presented to him, or happened to end up near him. Now, he is walking around the house by himself. He is able to navigate all the rooms in our home, and will happily go through cupboards or examine countertops. With this new sense of adventure, he also will seek us out often, and then want us to either play a game, or help him with something. In my previous blog, I explained how I often encourage him to go off by himself if he is just looking for an escort. However, if he is looking for something to do, or somebody to play


Eddie Can Do It

Today, I was in a movie theatre comparing myself to a clown fish. That doesn’t happen every day. I took my two daughters to see maybe one of the best animated films of all time, in my humble opinion. Most of you can probably guess by now that I’m referring to Finding Nemo. Just in case somebody reading this hasn’t seen the movie, it is a story about a very dedicated and over-protective father and his son…who happens to have one underdeveloped fin. I have watched this movie over a hundred times on video cassette, and never once pondered how I was and was not like the father in this story. Maybe it was the impact of the large screen, or the fabulous 3D, but today I found myself relating to this clown fish as a parent of a child with an impairment of some kind. In the beginning


A Visit with Peers

When school started this year, I knew that I wanted to sit down with Eddie’s class early on. I wanted to explain those unique attributes that Eddie possesses due to his blindness. Sometimes, out of learned politeness, children are afraid to ask questions about Eddie because they don’t know if it’s “OK.” I wanted to make sure, from day one, that there was always an open dialogue about his blindness and his autism behaviors. I began by explaining the obvious differences. We talked about braille and tactile graphics, and the kids passed around some of Eddie’s favorite books. Then, we talked about his cane, and how it is a helpful tool. We also had to talk about guide dogs, because kids naturally go there next. One child even brought up the concept of a guide pony, which


Back to School

Eddie’s first day of school is now only two days away. I’m not sure who is more excited, Eddie, or me. One of the reasons I haven’t been up-to-date on my posts lately is because the last few weeks have not only been busy, but also pretty hard on Eddie. If your child is anything like him, they also may be struggling with the end of summer, and the sheer lack of a routine. When school let out in June, I knew that we simply had to have some sort of routine to maintain Eddie’s sanity and general happiness. However, as much as I knew that to be true, it became impossible to provide. When every other week, day, or hour a new activity was upon us, it was just too difficult to set a schedule any of us could depend on. Also, we simply weren’t ready to give up our summer adventures


Domestic Explorer

One of the first things you learn when you have a child with a visual impairment, is that they have to access the world through touch. They can’t sit back and observe siblings, parents, and even the television to learn what things are, how they work, and what their purpose might be. For our children to learn, they need to be active participants in their environment. Within their possibilities, there is always a hint of explorer, and sometimes a full-fledged adventurer. It took Eddie awhile to tap into his inner explorer. He was scared of most things outside his reach, and waited for the world to be brought to him. We were always handing him things, and helping him access new information, but he just wouldn’t seek it out on his own. Within the last year, that has all changed,


Swimming, Riding, and Emotional Roller Coasters

Having a summer packed with activities has been fairly overwhelming for me, so I’m guessing my kids, including Eddie, are feeling the same way. Constantly being on the move has been fun, but also very exhausting. Yesterday, to add to the constant state of exhaustion, we went to our local theme/ water park. Eddie and his older sister had won complimentary tickets for doing a large amount of reading. Eddie’s was completed via audio books and listening to his parents, but still counted, as it should. I knew we were going to be pushing our limits by taking him to a water park AND attempting carnival-type rides all day long. However, there was a large group of friends going, and his sisters were so excited to go. We wanted Eddie to have a chance to participate as well. The


Finding the Button

It seems that this summer I am living in hotels. This week, I am lucky to be attending an International AER event. This acronym is truly a mouthful, but for those who are curious it stands for the Association for Education and Rehabilitation of the Blind and Visually Impaired. It is mostly for professionals in the field of blindness, but there will be one session specifically for parents. During the opening ceremonies, the keynote speaker was an entertainer, who happens to be blind, by the name of Tom Sullivan. While giving his motivational address, he made a comment that stuck with me. He said that a mother had once told him that her child could be motivated, she just had to find their "button". My first thought was that the parent was a positive thinker, and her observation


Learning by Example

Last week, I had the opportunity thanks to a program called “Teachers of Tomorrow” to attend the National Federation of the Blind convention in Dallas, TX. It was the first time in my life I had been anywhere where the people who were blind outnumbered those that were sighted. I went to multiple classes and meetings, but learned the most through observation, and by getting to know some adults that happen to be blind. I am in awe of the people I met, and what they have accomplished. I am not saying that those who impressed me were amazing “for being blind.” They were simply amazing, regardless of being with or without sight. There were university professors that I could’ve spent days listening to, some sighted, and some blind. There were workshops geared toward children with


I Like That

To date, most of Eddie’s language has been echolalia, or simply repeating something he heard. He does ask for certain things, but in a manner that was “fed” to him. For example, when thirsty, he ALWAYS says “I want water, please.” He never varies it by saying, “Can I have water?” or “Mom, please get me some water.” He sticks to a script that gets the job done. During the last week of school, we started hearing something new from Eddie. It was dictated to him, but he was using the phrase in a variety of settings. This new phrase was, “I like that ___.” The blank was filled in with the word “book”, first. Then, I heard him fill it in with the word “song.” It seemed Eddie was trying to express himself. This was a very different thought process than simply asking for his needs


Outsmarted

I enjoy being right. I tend to have strong opinions that I often don’t back down on. Even though I feel I excel at knowing everything, my husband may disagree. In fact, he gets downright giddy when I slip up, and becomes ecstatic when I admit it. Every once in a while I give him the pleasure of admitting I’m wrong, but secretly I usually think I’m still right. Maybe I am being a little sarcastic, but who doesn’t like being right whenever they can? This trait I have, good or bad, seems to have been passed down to my oldest daughter, Molly. She argues with almost everything we say, and we have to provide real proof if we want her to take our side. For example, when I was pregnant with our third child, Molly knew without any doubt that we were having another girl. Lucky for


Another Opportunity

Due to the unforeseen gift of having a son who is blind, I was provided yet another opportunity this last weekend that I probably never would have had otherwise. I recently completed a graduate program for teaching students with visual impairments, and my graduation was on Sunday. I had applied, auditioned, and was accepted as one of two student commencement speakers. An honor that I think requires a person to have a unique circumstance, and a story they are willing to share. Obviously, my unique situation is that I have a son who is blind, and because of that sought a degree to help him. What makes me appear unique to a general audience, doesn’t feel very out-of-the-norm to me. How I feel about myself, is that I am just a mom like millions of other moms. In general,


Outstanding Effort

Last fall, we had a very respectable doctor from a very respectable hospital tell us that Eddie may never walk independently. We were seeking an orthopedic consult, and instead were offered a free wheelchair, and a possible Cerebral Palsy diagnosis. I don’t even have to say that we were crushed by this appointment, and the information we were not prepared to get. Luckily, the doctor’s forecast was inaccurate, and Eddie continues to make great strides in mobility. For example, this past weekend we went camping with some friends. We were surrounded by great canyons, drop-offs, and natural hazards. (Just like any good camping trip.) For the first time, I was concerned that Eddie may walk off all by himself. I have never had to worry about that before…ever. Eddie never felt


Educated By Life

When Eddie was born, I am not exaggerating when I say he really was the first blind person I met. To me, our situation was very unique, because I knew absolutely no other person I could talk to that could relate to our new parenting adventure. Not only could I not call up a parent of a child who was blind, I didn’t even know anybody that had a child with special needs. I am sure many of you found yourselves in the same situation. Now, when I look around my life, I am surrounded by people that have children like mine, or similar to mine. I know people with children that have visual impairments, and we laugh about similar experiences that happen to those in our special club. Even though my education in the world of blindness has grown immensely, I remember when I wasn’t so


What is the Question?

Having a child with special needs sometimes means over-thinking every decision throughout your day. I wake up and wonder what his mood will be like, and how he is feeling. Once that is determined we have to decide if Eddie will go to school, or stay home. His daily health means possible medications changes, which is yet another decision. This is just the start of judgment calls we make on a regular basis. When we get invited to a function out of our normal routine, we first decide if we are going to go, and then decide if Eddie will go. I do this all the time; birthday parties, holiday gatherings, field trips, and even family vacations. I have been going through the same thought process since Eddie was born. Asking myself, will he have a good time? Will it benefit him to


Mutual Appreciation

Yesterday, Eddie attended a field trip at a park. He had a chance to explore a variety of things in an entirely new environment. Of all the things at the park, I was most excited to have him ride the carousel. I thought he would enjoy the sensation of going around and around, and the carnival music that always accompanies the antique horses. We had a lot of walking to do, and he did throw a fair amount of tantrums, which we simply worked him through. I kept thinking, if we could only get to the carousel, he would have a marvelous time. His balance wasn’t quite good enough to ride a moving horse, but I knew they had benches he could utilize. So, I just kept saying, “Wait until the carousel!” I figured with all the built up excitement, he would be thrilled to give it a


Mothers' Day Crafts

Most moms look forward to finding out what creative gifts their kids will bring home for Mothers' Day. It seems that a majority of teachers, at the elementary level, make sure to have a class project designed for the big day. As a parent of a child with a visual impairment, art projects make me a little nervous. I want my child to participate in activities that are meaningful to him, and art can be a tricky subject if you have a teacher that is not perceptive to a child's particular needs. Recently, I was talking to another parent of a visually impaired child, and we were laughing about the projects that travel home in our kids’ backpacks. Occasionally, you will see a perfectly colored drawing, or something made out of construction paper that is precisely cut and accurately


Have Cane, Will Travel

A year ago, we could not get an orientation and mobility instructor to work with our son. He felt that there was not any progress to be made and wanted to wait until he was more independent. I kept telling him that Eddie was constantly making gains and if he was moving at all, he needed instruction in orientation and mobility. Well, I didn’t stay in that area long enough to wage a battle on this front. As I have discussed, we ended up moving to another state. I was able to get an orientation and mobility instructor involved that was more than enthusiastic about working with Eddie. She immediately was trying out different canes and helping him feel confident about walking without holding anyone's hand. While she was not at his school, his aide was exceptionally diligent about


Mr. Eddie Turns Seven

Every time a birthday comes around, I find myself shocked that it has arrived. Can Eddie really be seven? Have I really been writing for Family Connect for over a year now? I remember writing about Eddie’s last birthday and the good and bad things about coordinating a birthday for a child with a visual impairment. This year, I found the same difficulties and new successes. The biggest obstacle is deciding what type of birthday party, if any, to hold for Eddie. First, Eddie loves the song “Happy Birthday,” and especially loves the day his name is added to it. Aside from that, he doesn’t understand the birthday concept. He doesn’t wait all year for the day of presents, or cake, or the grand birthday party. Instead of a party outside of school, we decided to incorporate his


Spring Break 2012

This year, we decided to have an adventure during spring break. We reserved a yurt in a state park campground on the ocean. If you do not know what a yurt is, it is a round hut-type dwelling that is quite small. Ours was big enough for a set of bunk-beds (queen size on bottom), a futon that could be folded down, and a small table. The best part about choosing this option over tent-camping was that the yurt was heated, and fully enclosed to keep out any spring rain. As you may have read last summer, we love to camp. Before children, what seems like decades ago, my husband and I camped quite a bit. After children, we found that camping with young kids was tricky, and camping with Eddie was downright difficult. While tent-camping last summer, he spent much time in the van with


Jealous...Not So Much

A common struggle in my life is not being jealous when I see other boys Eddie's age participating in sports, birthday parties, and other "age-appropriate" activities that he shows no interest in doing. My best friend's son is in Eddie's class, and I often watch him play sports thinking that Eddie would be doing the same thing if it wasn't for autism. Honestly, if he had the single disability of visual impairment, I'm sure he'd be up for much more. Eddie just doesn't seek out social interaction and certainly would rather not spend time with peers. So, I go to event after event, watching other kindergarteners, and can't help but think, "What if?" It isn't that I want Eddie to be somebody different, but I do sometimes crave a normalcy to his childhood that does not exist.


Accidents Happen

This weekend, Eddie had a fall down our one and only staircase. It is not a carpeted stairway, but does have walls on each side to keep him contained. Eddie was crawling up the stairs, which is his only way of independently making the climb at this time, and somehow ended up going down instead of up. He was near the top when he fell, so I can imagine it was very scary. My husband heard his loud descent, and quickly ran to his aide. (I was not home at the time.) He scooped Eddie up and comforted him until he stopped crying. After a recuperation period of less than ten minutes, Eddie calmed himself down. His dad checked for bumps, bruises, and broken bones, but none were to be found. This was a huge relief. The uneventful end to this story may have you wondering


Brainwash Attempt

The ongoing saga of Eddie and his little sister continues to this day. He often struggles to be around her in any capacity. She has started saying, "Eddie doesn't like me." As a parent, you expect your children to squabble from time-to-time. However, you don't expect their disagreements to alter every aspect of day-to-day living. At least, that is certainly not something I expected. CC is 3 1/2, and Eddie has lived with her for over half of his life. Sadly, all that time they have spent together has not helped him adjust to his younger sibling. There are moments they have fun together. This is usually adult-facilitated play, and a game Eddie really likes. Making these moments fun takes a lot of orchestration on the adult's part. I recently attended an autism


Trash Compactor

Eddie is constantly testing boundaries and pushing to have things his way. Luckily, the educators that work with him are aware of his motives most of the time. This week, he decided he wanted the teacher's chair instead of his own and was met with a surprise. Apparently, every time they were at his work table, he would inch towards the right, trying to sit in his teacher's chair. Each time, she would remind him that he couldn't sit in her chair, and that he had to find his own spot. Eddie would reluctantly move towards his seat and plop down. However, he finally decided to push the limit even farther. Eddie, as usual, walked up to his work table and began moving towards the right to find the desired chair. She said, "Your chair is to the left," but Eddie kept moving


Family Vacations and Trepidation

For some reason, when I think about planning a family vacation, the only word that comes to mind is trepidation. Since I don’t use that word very often, I decided to look it up in the dictionary. The definition stated its meaning as “a state of fear or anxiety.” Well, that sounds just about right. I used to picture our family taking long road trips and joining the crowds of tourists at Disneyland. However, since we were blessed with Eddie, the family vacations have been kept to a minimum. When he was a baby, we traveled to Hawaii and Alaska to visit family. He was an avid traveler that kept his cool on every flight; unless of course teeth were popping in. Now, I’m not sure how he would react to a vacation that might include plane travel or days in a car. My


Even Hot Dogs

In a New Year’s posting, I discussed my resolution to get Eddie to eat with utensils. As I’m happy to report, we are still working on that daily. He is now willing to use utensils, with help, instead of just getting really mad when we put one in his hand. This is one more step towards independent eating. However, I did have a psychological set-back earlier this week. I made Eddie lunch, and decided that since it was a hot dog, eating with his hands was appropriate. I set the plate in front of him and watched him immediately pull the “dog” out of the bun and eat it with his hands. Next, he tore the bun apart and ate it a little at a time. As you can imagine, before he was done eating there was ketchup all over his face and hands. The whole event was not pretty to


Incidental Learning

Those of us that have therapists in our homes and/ or have had our children in the educational system for any amount of time understand what incidental learning is all about. Basically, it defines the type of learning that happens when we aren’t trying to teach anything. It includes good things, like our children putting their dishes in the sink because we did. It also can include not-so-good things like those curse words that slip out while we stub our toe, or get a surprise bill in the mail. One of the first things I learned about having a child with a visual impairment was that incidental learning is almost a lost cause. He isn’t going to learn how


Feeling Isolated?

The greatest benefit of FamilyConnect is hearing that there are families out there with the same types of children as me. It is a way to connect with a population that is few and far between. Just the other day, a mother commented on one of my blogs that her daughter was my son’s twin. Wouldn’t I love to meet them!?! Even though we are not connecting face-to-face, we ARE being connected. That feeling of isolation minimizes every time I hear those types of comments. I purposefully said minimizes, because it never really goes completely away. Since my son was born, I have struggled with the lack of connections in the regions where I have lived. Previously, I have tried to help start-up local organizations for families that have children with visual impairments. Everyone


Go Team!

This winter, my eight-year old, Molly, has been playing on a club basketball team. Upon signing her up, we knew we’d be travelling on Saturdays to games throughout the county. We also realized we’d be introducing Eddie to a new environment of loud gyms, sitting on bleachers, lots of kids, dribbling basketballs, and cheering crowds. Since Eddie can be adverse to loud noises, we were a little nervous about how this would turn out. So far, he has been to two games and has done amazing. He sits in the bleachers (with snack in hand) and takes in all the sensory input a basketball game has to offer. We bring noise-cancelling headphones, but he must feel adventurous at times because he occasionally takes them off. As long as his younger sister is entertaining herself elsewhere, he


The Master of Pinching

Over the years, we have struggled with multiple behaviors that involved Eddie hurting himself or others. In the beginning, he often would mostly cause injury to himself. He would hit himself in the head, hit his head on the floor or on a wall, or use objects as personal weapons. Watching this behavior was very upsetting and we struggled with ways to deter it. Over time, we redirected this behavior, and see it less often. However, we are now seeing him lash out to others, which is in some ways more unsettling. The first time we saw this was through biting at the age of two or three. It came to a point where we were nervous to have him rest his head on our shoulder because we anticipated getting bit at any time. It doesn’t matter who you are, when you are bit at the nape of


Hi, Eddie

Earlier today, I was working in my office when the door slowly opened and I heard a voice say, “Hi, Eddie.” This is how my son greets people. He is in the process of learning how to talk to others, but often his references are confusing to those that don’t know him. When he says, “Hi, Eddie” I know he is trying to say hi to me. So, I say, “Hi, Eddie,” can you say, “Hi, Mom?” Usually, he immediately says, “Hi, Mom.” Eddie’s tricky way of communicating can make it hard for him to be understood. For example, when he says, “Want some lunch?” he means he is hungry himself. He says, “Are you all done?” instead of “I’m all done.” When he is trying to make a statement with a question, I usually cue him with, “What do you say?” Following that, he will sometimes say, “I’m all done”


Resolution Time

Happy New Year! It is time to make some resolutions. My understanding is that the more you share your resolutions, the more likely you are to keep them. I don’t always find this effective for me, because I can’t remember one resolution that really stuck in my life…ever. However, this year I have an opportunity that I have never had before. I get to share via FamilyConnect, and throughout the year, I’m sure I’ll have a chance or two to answer for what I write today. Of course I have personal resolutions that relate to losing a few pounds, balancing my budget, and in general being a better person; but these are not unique to Eddie and of no interest to anyone but me. So, I’m going to talk about a resolution that relates directly to my son with a visual impairment. I’ve


Walking Tall

Finally! At the age of six, Eddie is taking some completely independent steps. For over two years, he has walked with a hand held, or even a simple touch on the back of his neck. Within the last week, he has begun walking without any type of touch or support. We stay within close range and when he starts to feel insecure, we just let him know we are still there. With a few words, he marches off again. I can’t explain how long it feels like we have waited for this to happen. We have taught him to hold his cane, but he has had little use for it when an adult was always guiding his steps. Now, he needs a cane because he is guiding himself. That is extremely exciting for me! I can’t wait to send videos to all his previous therapists to show them what they have helped him


Holiday...Parties

Yes, it is another holiday post. This time of year certainly gives me a lot to talk about when it comes to my son with a visual impairment. Today, Eddie’s kindergarten class had their holiday party. Because Eddie participates in class whenever he can (which means whenever he is not throwing a tantrum), his Dad and I wanted to attend. I mean, why wouldn’t we? This is his class and these are his peers; in the small town we live in, they will always be his peers. First off, we walked through the front doors of the school and we heard Eddie wailing down the hall. I think to myself, what a great start! (Insert sarcasm) The other parents, siblings, and students are moving into the classroom and we are moving down the hall to find our loud son. Come to find out, he simply was


Holiday Letters

Being December, it seems I can’t get away from writing about the holidays. Besides buying presents, another thing that comes up annually is our holiday letter. Not everybody participates in this tradition, but many of my family and friends always send out cards and often letters this time of year. I’m sure you’re familiar with the holiday photo card and possibly an insert about what loved ones have been doing over the past year. This can be yet another hurdle for those of us with children that are as unique as ours. After Eddie was born I did not send out a holiday letter or card for a few years. It was just too hard to write and


Searching for Presents...Again

Well, here we are again. Those of us with children who have visual impairments are desperately searching for the best holiday present ever. The only problem is that we have no idea where to start. I look at my son’s room full of musical instruments, funny sounding stuffed animals, CD’s, and braille books galore and do not know what direction to take next. It seems I’ve already covered most categories. It isn’t simply his blindness that makes him hard to shop for, but also his developmental age. He doesn’t grow by leaps and bounds annually, so he still likes the same types of things that he did last year. It isn’t like my 8-year-old who wanted Barbie toys last year, and this year has moved onto teenage stars of Disney. Her new preferences give me new present ideas, but


Jam Session

I often worry about Eddie and his other two siblings and what their relationship will be like. To date, he shows little interest in them and often irritation at their efforts to include him. When talked to, he often says “goodbye” or covers his ears and drowns out their voices. As a result of his quick irritation, he always prefers to be in his room by himself than with the rest of the family. During any group activity, including meals, he finds the quickest escape route and makes his exit. Today was a pleasant deviation from most nights. My oldest, Molly, needed to get in some reading time for school. Instead of finding a quiet place for her to read to me in seclusion, I decided to have her read to me in Eddie’s room. As usual, he was in there, and I simply hate


Trick-or-Treat

About two weeks ago, Eddie was sitting on the couch next to me and randomly spouted “Trick-or-Treat.” Amazed, I ran to the kitchen, found him a piece of candy, and handed it over. As you might expect, this happened four more times in less than two minutes. It seemed Eddie was getting the concept of Halloween. Then, I had to tell him candy was “all done” and as you can imagine, he really didn’t like that answer. Since then, we have heard him try “trick-or-treat” a few more times, but unless candy quickly appeared in his hand, he gave up the request. Tonight, we were really playing up the whole concept of Halloween and trying to teach Eddie how much fun it was. This required lots of candy placed in his hot little hands, and lots of candy eaten by him. When we finally got


Eddie is Nice

I have been talking a lot about kids lately and how they perceive and interact with Eddie. It seems when grown-ups are uncomfortable, or thrown off guard by Eddie, other children seem to step right up to the task. Adults often talk around him or misinterpret his behavior, or sometimes even ignore him. Kids won’t be bothered by all that nonsense and simply accept Eddie. I think adults that are unfamiliar with special needs children struggle with many emotions when it comes to kids like Eddie. They want to interact, but aren’t sure how. They want to talk to him just like any other kid, but don’t know how he’ll react. With Eddie, many questions are left unanswered and conversations are left one-sided. Those of us that are used to it keep on talking anyway and ignore the


Master Manipulator

From an early age, Eddie figured out ways to get out of activities he simply didn’t want to do, or that were hard for him. It didn’t seem to matter what developmental milestones he wasn’t hitting, he was mastering all the milestones of manipulation. This was especially true when it came to avoidance tactics. Just when we thought we had him all figured out, he’d come up with another strategy. We first noticed this skill when he was six months old. His physical therapist would come over and work with Eddie for about ten minutes and then Eddie would fall asleep. He literally went limp with his eyes closed. Of course, after trying to wake him without success, his therapist would pack up and say, “See you next week.” After the third or fourth time of this


Curious Kids

One of the greatest things about Eddie being at a new school this year is the outpouring of curiosity. His school has about 600 kids in grades Kindergarten through 12th grade. It is a small, rural community that may have never had a student with Eddie’s level of visual impairment. Because of this, the kids are so curious about his cane and blindness in general. It is so fun to field questions as we walk through the halls with Eddie. The first week of school, a student came up to us and asked me if Eddie was blind. He said he had never known a “blind person” before. I said, “Well, now you do. This is Eddie. What’s your name?” I love to introduce Eddie to other kids because it is good for him to learn about the social world around him, and it is great for other kids to


You Just Do It

A couple weeks ago I was able to attend a two-day event filled with motivational speakers. It was not meant to have anything to do with special-needs kids. However, one of the first speakers was telling her life story and sort of just “threw out” the fact that her son was blind. It really caught my attention because that is exactly how I refer to Eddie. It isn’t something that sits at the front of my mind, and it isn’t something that I feel I’ve “overcome”, it is just a simple fact about my son. The speaker told of great tragedies she had been through and dealt with. She spoke of the trauma that took her son’s sight, but didn’t even mention it left him blind until she was telling another anecdote about him. She went on to explain that she went back to school because that is


Tips for Teachers

At the start of this school year, I'm reminded there is a pretty steep learning curve when it comes to understanding visual impairments. Everything that we know about children and how they learn is turned on its head when you apply those same principles to students without 20/20 vision. With that in mind, there are a few quick tips I'd like to throw out there for classroom teachers first experiencing a student with a visual impairment. 1) Forget about incidental learning. A statistic I have quoted many times is that 80-90% of what a typical child learns is visual and is often through incidental learning. They see an older sibling eating with utensils and they think, "Hey! I'm supposed to use a fork." Children without visual clues won't automatically pick


First Day of School

Last week, Eddie started Kindergarten at a new school, in a new town, with new teachers, new hours, and new classmates. That is way too much “new” for Eddie. His Dad and I dropped him off in his room and we left him completely overstimulated sitting at a table. He was covering his ears and making a sound I can only describe as whimpering. It isn’t quite crying, and a little like whining, but basically he was letting us know he was upset. This may cause a parent of a typical Kindergartner to linger and make sure their child is OK and that they aren’t going to be emotionally scarred from being abandoned at school. This was not the case for us. Eddie had visited the school previously and had been talked to at length about going to school so this wasn’t like we were dropping him


...Has Cerebral Palsy

When I began writing this blog there was so much about Eddie we didn’t know that it seemed so appropriate to title it “Raising a Child Who is Blind and…”. With him, there is a surprise lurking around every corner. I had mentioned previously that he had an orthopedic impairment that we were going to have looked into; that research turned into a new label “cerebral palsy.” This “label” was suggested by a specialist who spent a grand total of twenty-five minutes with Eddie. Isn’t it amazing how one person, playing such a small role, can make such a large impact? My husband, who actually took Eddie to the appointment, broke the news to me. The first thing I did was mentally flash forward to Eddie as an adult and what that might look like. I saw Eddie in his twenties, in a worst


BIG Changes

The last couple weeks have been a little hectic in my life which is why there has not been much posting. We decided to move our family because I was offered an exciting position as a teacher of the visually impaired. Taking the job required moving to another state and uprooting our family, which is never an easy choice to make. Making such a drastic change is even harder when you have a child with special needs. To move Eddie required verifying insurance needs months in advance and determining new services and new people to provide those services. He had a phenomenal team for six years that loved him and I had to wonder if we would find that again. Even though we have only been moved a week, I’ve been met with enthusiasm from his new school and growing support from a small


Another Waiting Room

This afternoon I found myself in another waiting room with my dear son, Eddie. We traveled hundreds of miles to see his ophthalmologist today and his endocrinologist tomorrow. This is a fairly routine trip for us, no new concerns, but one that must be repeated fairly often. As we sat in the waiting room, I realized I was not modeling very good parenting as a mother of a special needs child. I really try to hold Eddie accountable for his behavior and squeeze in as much incidental learning as I can when we’re in public. I try to stop any repetitive behavior that wouldn’t be considered “appropriate” and I ask him to use his “indoor voice” when he insists on singing as loud as he can. I also try to explain everything he comes into contact with and encourage him to use his cane


Bad Way to Start the Day

Already today, and it isn’t even two o’clock, I am totally wiped out. I knew this morning would be busy because we had a full schedule, but why did the first appointment have to be so exhausting? I had to take all three children into the dentist because Eddie and Molly both needed about fifteen minutes or less of attention. Molly went in first for a few sealants and I was in the waiting room with CC and Eddie. I knew that having them in such close quarters was risky, but if I’d known how risky, I’d have desperately tried to find a sitter for CC. Every peep uttered by my youngest had Eddie possessed by demons. He threw tantrum after tantrum which culminated in hitting himself and trying to pinch me multiple times. CC would wander to play with a toy for a bit and we would have


Campout

Yesterday, I was accused by my husband of planning family events just so I’d have something to blog about. Even though that isn’t true, I can’t help but admit that any type of family time can usually be posted about because it is always an experience worth sharing. This weekend was no different as we decided to take our three kids camping for the first time in six years. We loved to camp pre-children and were anxiously awaiting the day when we could put our tent up again and give it a try. The biggest obstacle over the past few years was consistently having a child that wasn’t independently mobile on their feet. Nothing against crawling children, but they aren’t the best campers and usually end up eating way too many things off the forest floor. Eddie still isn’t totally


King Edward’s Coronation

When we named Eddie, we realized that “Edward George” had a very English royalty ring to it. In fact, many close friends referred to him as “King Edward” for the first few months of his chaotic life. However, it wasn’t until Friday that he was officially crowned. Actually he was crowned four times, on four different teeth. Dental work with a special needs child is turning out to be an unexpected complication in a life that is never ordinary. With small kids, usually a trip to the dentist includes a quick cleaning with possibly a filling that provides little trauma and then a new toothbrush and a token prize on the way out the door. Of course, not with Eddie; why would anything be so simple? He has never sat still for x-rays, so the cavity we knew he had was due to its sheer


What Would I Be Doing?

As I continue working my way through a graduate program to become a teacher of the visually impaired I often ask, “What would I be doing if it weren’t for Eddie?” Here I am pursuing a career I didn’t even know existed until Eddie was born. When I received a secondary teaching certificate nine years ago, there was no way I would have ever gone into special education. I thought I didn’t have enough patience, enough experience, or enough understanding of disabilities to work with children in special education regularly. Here I am, three kids and a few years later, heavily involved in this field. What I think happened, is that Eddie took away my “fear factor.” I didn’t know any children with disabilities, had never interacted with any, and really didn’t understand that they are


Fun in the Sun

The kids and I are staying at my mom’s this weekend and we were able to enjoy some great sunshine yesterday. Usually on hot days, Eddie tends to stay indoors because he doesn’t regulate his temperature very well. He gets hot pretty fast; not just his temperature, but also his attitude. Therefore, we try to keep Eddie as cool as possible. So, per our normal routine, the girls, Grandma, and I were playing outside in the sun and Eddie was happily playing alone in the nice cool basement. After a little time outside, and realizing how much fun we were having, I decided to risk the nice afternoon and have Eddie join us. I say “risk” because everybody was perfectly happy, and bringing Eddie into the heat with his loud sisters could spur a tantrum that would drive us all indoors


New Perspective

I have been thinking a lot lately about how Eddie has changed my view of the world. Many things that used to be very important to me, or would cause me to stress out, seem so insignificant. The daily grind of life now seems like something I need to keep doing, but not the purpose of my life. If I spill coffee on myself on my way to school, oh well, I’ll wash it when I get home. If a favorite item is misplaced, I think to myself I’ll either find it later or I won’t. I’ve wondered why being Eddie’s mother has affected me in such a way? Why is it that because of him I don’t get easily worked up? What I’ve decided is that I cannot change the fact that Eddie was born with a disability and that is simply why my perspective has changed. Even though I wouldn’t change Eddie if


Just Can't Get Away

I am currently spending some time away from my family working on coursework for my graduate degree. I’m staying with friends while my children are enjoying quality time with dad and their grandmas. The time I am away is significant enough that I am able to catch up on sleep, work on tasks I haven’t been able to fit in, and enjoy a tiny bit of leisure reading. However, as any parent would agree, there really isn’t such a thing as total time away. I have gotten good at letting things go a bit and allowing my husband to be in charge. Realizing that I am hundreds of miles away, I have decided not to micro-manage what is happening at home. As I’ve said before, I am a bit controlling, and I have to mentally make a decision that I will not try to run things from afar. James is


Exhilaration and Exhaustion

Well, we are at the end of week two of potty training and Eddie is doing amazingly well. We are so excited about how fast he caught on and the support we’ve had through this process. In the past week, he has only had one accident and that was due to our negligence. We take him to the bathroom every 1 ½ - 2 hours and he knows that is when he should do his business. However, sometimes we get distracted and forget to take him. We are hoping our absence of mind may eventually result in him deciding to ask to use the bathroom. It would be nice to see a slip-up on our part turn into something great like self-initiation. Again we expected Eddie to be successful and he has been. We now find ourselves asking, “Should we have pursued this sooner?” and “What else can


Operation Potty

This week we have embarked on potty training boot camp for Eddie. Once again we acknowledge how different teaching Eddie is then teaching our other children. For our oldest, she woke up one day at 2 ½ and decided she would no longer wear diapers. From that moment forward she was potty trained and has only had a handful of accidents since. Eddie, at 6, was showing absolutely no interest in using the bathroom. This is also true for our almost 3-yr-old, but that is another story. This spring, we decided to devise a plan for potty training Eddie. We had to wait for school to be out to fully take it on. What it has come down to is five adults, a kitchen timer, twenty pairs of underwear, jelly bean reinforcers, endless cleaning supplies, paper towels, wipes, and a multiple


Only Sometimes

This past weekend my family (and two grandmas) had the opportunity to attend the annual “Family Learning Weekend” at our state’s school for the blind. This is an event that we have missed once since Eddie was diagnosed and that was only because he was in an intense therapeutic program at the time. When we get any invitation to learn more about Eddie and talk with other parents like us, we just can’t turn it down. I’m definitely a “support junkie”. This year, we were again asked to be on a “parent panel”. As I believe I’ve mentioned before, multiple sets of parents sit in front of the group and share stories about their children with visual impairments. I never turn this opportunity down because I hope to help someone in the audience through sharing. I always learn from


Another Sleepless Night

Children with visual impairments often fall into crazy sleep patterns, which is pretty much common knowledge. After having Eddie, I learned that those with Optic Nerve Hypoplasia seem to be infamous for their sleep habits. The amount of sleep he requires is sometimes unsettling. I’ve seen him sleep for one hour and then be up for twenty-four. I can say I’ve even seen this more than once. Needless to say, Eddie is not allowed to nap. When any napping occurs, his entire sleep schedule is thrown out of sync. It is bad enough that he often gets up around 4:00, but to have him up all night is usually not a treat. Unfortunately, this happened the night before last. I will admit…it all started with a nap. Eddie woke up at 3:00 on Tuesday morning. When Eddie gets


The End of an Era

Stating that a child’s graduation from pre-school is the “End of an Era” may sound a bit dramatic, but for me that phrase seems very accurate. On Thursday, Eddie had his final day in a pre-school program he has been attending for three years. It was a very emotional day for me and for all of the pre-school staff. I remembered back to his first IEP meeting to set-up this program and how nervous I was about everything. Would he get the services he needed? Would they provide braille and O&M? Would he like pre-school? And most importantly, would they take care of my son not just out of duty but out of love? All of the answers turned out to be yes; even the last one, which was the most important. The staff at this program easily loved my son; my son who can be


Fun, Games, and Minor Back Pains

For the past few years, Eddie has been invited to attend an event called the “VI Games” at our state’s school for the blind. At this annual event, activities are planned for children with visual impairments from the ages of 3 to 21. Kids are broken up by age group, and then participate in multiple events including gymnastics, swimming, bowling, and track and field. In the past, when the invitation arrived I always declined to go. I thought that because Eddie wasn’t walking independently yet, and because he may not fully understand the event, it would be easier to stay home. I imagined all the other children fully participating and enjoying themselves and thought it might be hard for me to get in the spirit while struggling to physically assist Eddie through the


Serendipity

Last week lightning struck and I happened to be in the right place at the right time. My family was out to dinner and Eddie drew a little bit of attention as he walked in with his white cane. We were quickly approached by a man not much older than me who was dining with his parents. He introduced himself and his mother and immediately I was aware that he happened to be blind. He said his parents pointed out that our son had a cane and he wanted to meet us. I was so grateful that he came forward because I don’t know that I would have been brave enough to approach him. After brief


Annuals and Anxiety

Recently, Eddie had his annual well-child check-up with his pediatrician. This is the only medical appointment that sneaks up on me every year. Eddie has to see a specialized physician every three months so I never really feel like he is short on doctor visits. I understand that checking in with the pediatrician is important, but it always brings up old feelings and sometimes new issues. The thing that I have always hated most about these annual check-ups is the ritual of running through developmental milestones. Since the time Eddie was nine months old he has missed virtually everything on the list. His first doctor insisted on going through them every time no matter what. I’m sure there could have been liability issues if he skipped it, but after saying “no, he


"Who's Your Best Friend?"

Eddie has participated in therapeutic horseback riding since he was eighteen months old. I have heard miraculous accounts of what children could achieve when riding and the language that can be discovered. Just today I heard a story of a young rider whose very first words happened on a horse and that type of story is not uncommon. Because Eddie has been riding for 4 1/2 years we have expected our own tales to tell of great discovery and achievement while riding. The reality is that Eddie's progress has been slow...steady...but slow. It was less than a year ago when he began to communicate verbally


Happy Birthday, Eddie

Yesterday Eddie turned six. Birthdays to us are all about finding a meaningful way to celebrate and generally assuring that Eddie has a fabulous day. Basically, two major tasks comprise my planning. First, let’s start with the presents. Some of you may have read the article I wrote about purchasing toys for visually impaired children for Family Connect. It is always a difficult process; especially when I feel like I have purchased all the great toddler and preschool toys and he has not developmentally progressed to the next step. Another difficult part about presents is that most of our family and friends want my advice on a great toy. What does Eddie need? What does he like? What does he want? This isn’t an easy question when I can’t just ask Eddie. I left


Feeling a Little Guilty?

Do you like to read? Do you have a favorite hobby? A favorite TV show? Do you like to have a “date night” with your significant other, or a “girls night out” with all your best friends? Every time you indulge in your favorite activity do you happen to feel a little guilty? More than a little guilt? Well, if you answered yes, I can relate. I think all parents feel some guilt when they do something for themselves and step out of the parenting role. This can be intensified when you have a child with a visual impairment. I spend a lot of time teaching Eddie and simply being his mom and I often think about the goals yet to be accomplished and how much teaching and parenting sits ahead of us. Really thinking about that “to-do” list could surely trigger a full-out panic


Eddie and "CC"

Today I feel like finally discussing our biggest struggle. My husband and I are lucky enough to have three children, as I’ve mentioned. Eddie is the second child, only eighteen months younger than Molly. Eddie adores Molly and thinks she’s hysterical. Anytime Molly laughs, Eddie laughs. Molly has just started really cueing into Eddie and understanding why his life is different from hers. They used to act like two “only children” but now she seeks Eddie out and helps bring him into our world, whether he wants to be or not. Eddie’s younger sister, Cindy or “CC” as we call her, is a very different story. As of right now, Eddie views “CC” as the thorn in his side. She is 3 ½ years younger than Eddie, weighing in at 2 ½ years old. For the past year, Eddie has decided he


Music Class Part II

I knew Eddie was going to have an “on” day from the moment he got up this morning. He crawled into our bedroom and then stood up next to the bed. As he was climbing into our bed (which he sometimes does) he said “I love you.” Instantly I was ecstatic because he had never said that to me directly. However, being the “turkey” that he sometimes is my excitement was quickly diminished a bit. After waiting long enough for me to be thrilled, Eddie quickly added…“Daddy.” Of course. Since I knew this was going to be a great language day, I was ready to take him to another music class. For those of you who read my previous post about the infamous “head-butting” incident in music class, you can understand why I was a little anxious to go back. Luckily, the music teacher had


What is up with that kid?

Three times since Eddie was born I have been asked to participate on a "parent panel." This is a great experience to share with other parents our story from the moment Eddie was born until where we are today. I can honestly say I was a pillar of strength twice and a sobbing mess once. Admittedly, the time I cried the whole time (which wasn't pretty), I was 7 months pregnant with my youngest. I have no idea why I even agreed to share on that occasion. The last time I was on a "parent panel," I was asked by other parents how we handle stranger's questions and stares in relation to our son. I'm sure we


The True Inspiration

Today I was thinking again about when we learned Eddie was blind and where I turned first for inspiration. Because I didn't know anybody who was blind I clung to books and stories about adults with visual impairments. I read every story knowing that Eddie could be just like them one day. I thought Eddie will be adventurous; he will downhill ski, he will climb mountains, and he will be highly successful and inspirational. I felt like I was reading about our own future in those amazing books. Now, I still expect great things from Eddie, but I don't expect him to be all the same things those men


Friends = Cookies

Eddie struggles with peer relationships and doesn't typically enjoy other children unless with an adult. It seems the only purpose of the adult is to keep the children at least 2-3 feet away or out of his personal bubble. If touching is involved for the purpose of the activity that is OK, but certainly puts the other children's safety at risk. I almost feel like having parents sign a disclaimer before playing even "Ring Around the Rosie" with Eddie. It might read something like: "Yes, we will be playing a traditional game and in most cases all children enjoy the activity. However, in the event of


Why are you hearing from me?

My name is Emily. My husband and I are parents to three unique children including my middle child, Eddie, who is blind with multiple disabilities. For what I can only say were therapeutic reasons, I recently began writing short "journal" entries about the interesting aspects of raising Eddie. What I quickly realized was that my intended audience was other parents like me. Parents that had children with visual impairments and could relate to my stories without feeling anything but understanding and familiarity. FamilyConnect has given me the opportunity to reach that intended audience. If


Apples and Oranges

When we were first told that Eddie was blind, I could not stop comparing him to other children his age. As many parents will tell you in my same situation, you almost have to disconnect yourself from your child's peers. Most of us hide out in our homes and make midnight jaunts to the grocery store. This time period of isolation varies per parents...it can be days, months, years, or sadly, forever. For me, it was somewhere between days and months when I realized that if I wanted friends at all, for me or Eddie, I had to come to grips with who my son truly was. Living in a rural town, I was never going


Labs and Crocodiles

Every three months, Eddie is required to have his blood drawn to check on hormone replacements he must take. The day begins by fasting (starting at midnight)...no food OR water. For Eddie, the water is the hardest part. From the time Eddie wakes up, he follows me around the house saying, "drink of water". "Drink of water." "Drink of water." It is horrible because he doesn't understand why Mom is being so stingy with the water. I'm sure he's thinking, "It's just water. I'm not asking for pancakes!" After a few hours of feeling like a horribly negligent parent, I am finally able to take him to the


Overwhelmed...sort of

Wow...what a week! It was pointed out that Eddie is a vessel for Autism...how's that for positive spin? :-) Then, Friday, we had his IEP meeting. For those of you not in the know, that is an annual (at least) meeting at school where we discuss his progress, goals, objectives, etc. It can be a little intimidating and a lot overwhelming. Eddie's meeting lasted over 3 hours and over a dozen people attended. It can be hard to hear all the things your child isn't doing yet, goals that haven't been met, and milestones that are yet to be checked off. What am I saying, "it can be hard"...no, it just is hard.


...Autistic

When I began this blog I knew Eddie was blind and I knew he had significant developmental delays but the reasoning for that wasn't clear. Well, now it might be. Yesterday he was officially diagnosed with Autism. For many months we had considered the possibility but had run into problems in assessing him. First, many evaluators didn't know how or were afraid to diagnose a blind child with Autism. Second, many blind children are misdiagnosed with Autism. Third, we weren't sure what would change or how it would be changed with an additional diagnose. Finally, many of his therapists were already using


He Made a Funny

Eddie told his first joke yesterday. It was awesome! This is the kind of thing that is always great when your kid does it, but for Eddie it was monumental. We weren't just excited about it, but we were proud of him. Of course, I'm not sure he knew it was a joke, but he does now. He always gives the punch line when prompted and laughs hysterically right along with us. It isn't the same without sound effects but here it is just the same: His Dad, "Eddie, how did you sleep last night?" Eddie, "I went...(insert snoring sound effect with eyes closed)." I know, maybe only a simple


School: To Go or Not To Go

Trying to decide whether a child is sick or not when they can't tell you themself is very difficult. When said child also has a tendency to be a trickster to get out of unpreferred activities, it makes it even more of a guessing game. For the most part, Eddie loves going to school, but on occasion he knows it is a lot of work. These days I have to decide if he is really sick or acting sick to take a "personal day." Today was one of those days. He didn't really want to wake up. Yes, he did have the stomach flu over the weekend, but yesterday he was fine. No, he didn't have a fever, or any symptom


Grieving

As I work my way through school to become a teacher of the visually impaired, which I'm doing now, I keep running into information about "grieving." Most often we think of grieving as the actual death of someone, but we can actually grieve a great many things. Through brainstorming at school, different types of grief were mentioned including grieving a lost job, lost marriage, lost friendship, and even lost dreams. As a parent of Eddie, that last one "lost dreams" is something that I have to realize and work through on occasion. When we were pregnant with Eddie we had a lot of hopes and dreams for our


Choice Words

Meaningful words have been few and far between for our son, Eddie. He literally can sing hundreds of songs, but has yet to put together language for functional purposes until recently. Over the past six months, we have began hearing words that are direct requests from him and are giving us the first look into not only his needs, but also the things he really likes. What we have come to realize, is this boy really loves food. Our early-rising son likes to get up between 4:00 and 5:00am and work his way to the side of our bed. He sits down there on the floor and a cascade of food requests pour out from


Shoes

Shoe shopping with young ones...oh, the joy! Trying to find shoes for little feet is very complicated, especially when they have to be just the right color, or the right character, or they need lights, or wheels, or plain...oh yeah, and Mom says they have to be the right size, too. Good grief. All the gadgets is certainly not a problem for Eddie, he doesn't care. However, my dear son does have foot orthotics so I have to buy him a shoes 2-4 sizes too big, they have to be wide, and then I immediately rip out the insole and cut off the tongue sometimes. It seems wrong to take a new pair of shoes out of


Just the Beginning

Introductions...I am the mother of three children. I have two girls with a boy in the middle. My son would be the "Special Needs Child" I'll be most often referring to; he is five years old, loves music, has a great laugh, was born blind, and also is developmentally delayed as a result of??? He has autistic tendencies, but an autism diagnosis has not been given officially. The reason for this blog...I often feel the need to complain or even to get excited about parenting my son, Eddie. What I've found is that it is really hard to share these sentiments with people who aren't in my unique situation.