Raising a Child Who Is Blind and...
by Emily Coleman
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 expectations for all of us. Grandmothers who had to embrace the idea of a grandchild being blind but also had to witness their own daughters, or sons, go through it. Sisters whose lives were quickly and dramatically changed when a sibling with special needs moved into the house.
As a teacher of the visually impaired, I’ve been mentored by, and worked closely with, some of the most outstanding women in our field. Women who embraced students as if they were their own. Women who educated my son like he was any other kid and saw strengths only his family noticed. Women who went to work every day educating teams, driving long hours, and creating homemade teaching tools just to do what was right for students who were blind.
As an administrator at a school for the blind, I thought maybe there weren’t quite as many women within these roles. However, many women leaders showed up to the AFB Leadership Conference last week. Women who are CEOs, superintendents, and presidents and some also happen to be blind. Women who are educators traveling the world, who are leading university programs, who were presenting at the conference, or who are pushing the field to greater heights in their own worlds.
As a person with many identities, I most strongly identify with being a mom. It’s the only “title” that evokes emotion in me every time. It’s my favorite name to be called, and my favorite person to be. Although I admire and look up to women in a variety of roles, I relate the most to those of you reading this who are mothers. May you find yourself a leader in your home and in your child’s life because that is where the greatest work is done.
AFB posted this quote from Helen Keller on twitter this week, “Every child has a right to be well-born, well-nurtured, and well-taught, and only the freedom of women can guarantee him this right.”
Blog Posts by Emily Coleman
by Emily Coleman
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 his file so check it out.
2. Explain all procedures. Eddie’s favorite phrase is “and then.” He wants you to tell him what’s going to happen before it happens. You can’t “surprise” children who are blind with a shot or a thermometer or anything. If you even try, they will immediately distrust you.
3. Speaking of explaining, talk directly to the child. Although Eddie isn’t very verbal, he listens, and if you talk to him, he’ll pay attention. Simply treat kids who are blind like all kids. If you’d typically explain to a child who is sighted, just do the same. Just because they don’t make eye contact doesn’t mean they aren’t listening.
4. When safe, let them explore the instruments you use. From the Band-Aid to the IV bag, they won’t understand until their hands are on it. After showing Eddie what a stethoscope was, he enjoyed having his vitals checked and was asked to “help” hold it down. This kept him still and engaged instead of making him fearful of what it was and what it was going to do to him.
5. Finally, don’t move any part of them or touch them with anything without telling them first. Simply say, “I’m going to move your arm now” instead of grabbing their arm and moving it. This is another way to lose trust immediately if you mess this up. As I said before, surprises are not helpful when working with kids who are blind. They may not want you to do what must be done, but it’s better to share than to shock.
Overall, we were impressed with the medical team working with our son last week. They paid attention to Eddie, and they asked us how to make the whole experience better for him. We have definitely seen everything I mentioned done wrong before, and we will again. By sharing these five tips, maybe some medical practitioners will be more aware the next time they encounter a child who is blind.
Resources for Working with Your Child's Doctor
by Emily Coleman
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 blind "mannerisms"? How do you know that an autism diagnosis is the best thing for Eddie? For all of these questions all we could say was “I don’t know.”
I wasn’t sure if the diagnosis was appropriate, but at the time it explained why his language was behind. It explained why he didn’t seek out affection, and why he spent most of his time avoiding people, and being alone. It gave us something to provide the school, so they could attempt to determine what kind of program was appropriate for him.
It was something to hold onto, so with sadness, we reached out and grabbed it.
Now that he’s ten, I still don’t know. I spend doctor’s appointments and late night conversations with my husband rolling this question around. Because of the diagnosis, he’s had access to more programs and increased services. Because of the diagnosis, I’ve become part of another community of people I adore...people affected by autism. However, is it fair for me to be a part of that world, when the answer is unclear?
I asked that same question to my son’s neurologist, and his answer was simple. Regardless of Eddie’s “label,” he contains all of the characteristics of a child who is autistic. He benefits from the services, programs, and supports. He fits in that club, too, and for that reason alone...it's fair.
Fair as it may be, I worry. I worry that his “label” is met with lower expectations. I worry that others will not set the bar high for him because he isn’t just blind...but also autistic. I worry that he’ll miss out on opportunities, relationships, and an appropriate education.
But when I think about Eddie, as my son, and as an individual...I’m in love. I’m in love with his quirky sense of humor, and the way he can impersonate me with accurate pitch and intonation. I’m in love with his musical inclinations and desire to dance. I’m in love with the way he runs faster than his sisters to the door when I return home from work, and he even has an orthopedic impairment, too!
The reasons we initially sought the label “autism” are some of the same reasons I’m in love with him now. For that, I embrace the diagnosis and I embrace Autism Awareness month. We may never know for sure if Eddie is truly autistic, but if autism is responsible for what makes him unique, then I’m grateful for it. I may not love the way Eddie has to struggle to find words and meaning in an abstract world...but I love Eddie, the child...label or not.
by Emily Coleman
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, sometimes he listens to people talking.”
I explained that he likes the sound of some voices, and also might be interested in what they’re talking about. Then, the questions got harder.
CC said, “Mom, how is Eddie going to learn math and reading?”
I said, “It’s hard for him, because his brain works different than ours.”
CC followed up with, “Right, cause he’s not just blind. Blind kids think learning braille is really easy.”
I started tearing up as she really began developing a “concept” for Eddie and all the unique components that make him different from her.
CC then said, “So, if his brain works different, is that why he says “Gum, please, OK!” instead of just “yeah” when you ask him if he wants a piece of gum?”
“Yes,” I said.
“Is that why he doesn’t talk very much, too? Why he doesn’t say things like “can’t” and “don’t?” Cause his brain is different?” CC asked.
“Yes,” I said, because it was all I could manage to say as I tried not to cry.
Finally, CC said, “If he was just blind, he’d probably just talk like the rest of us.”
I quietly nodded as she found herself comprehending the truth we, too, had to understand in year’s past as Eddie’s developmental delays only grew in scope. I again found myself grieving inside the loss of not a sighted child, but the loss of the child I once thought was “only blind.”
It’s amazing how many different times and how many different things we must grieve when we have children with special needs. On this particular day, I couldn’t help feeling sad, but I was also grateful that CC was developing an understanding of what makes Eddie “tick” and was so matter-of-fact about it. The more she understands him, the more love they can share with each other, which is why I was able to catch them playing together the other day.
Eddie and CC used to be like oil and water. He couldn’t stand to be in a room with her, and her feelings were hurt regularly because of it. Recently, I found them playing a game together in the living room that had them both giggling and Eddie asking for “more, please” over and over again. Many things make him different, but there are so many more things that make him the same.
by Emily Coleman
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 mall?”
“Do you want to go to the park?”
“Do you want to drive around?”
This went on for about five minutes. Finally, I asked Eddie if he wanted to go to the toy store, and he replied with another “No.” So, I decided we were going there anyway.
Before going inside, I explained what we were going to do in the store. I told him that we would find all the toys that made interesting sounds, and that he could listen and play with them as long as he wanted. I told him that if he found something he liked, I’d be happy to buy it for him, but he could only pick one thing.
While talking to him, I realized that he’d never been able to spend time in a toy store without an agenda and without the loud distractions his sisters easily provided. When they were with us, the constant “Mom! Can we have_______?!?!” was the only sound to be heard and Eddie was forced to tag along. This time, I’d be the one tagging along and he’d be the one asking for something in his own way.
Eddie and I entered this unique, local toy store and immediately found items of interest. We walked right into the musical toy section, and he tried out almost everything. Then, we found a shelf of stuffed birds that made actual birdcalls and he tried almost every one, smiling and laughing the whole time. Next, we found a shelf of novelty toys that squeaked, rattled, honked, and more. Multiple items on this shelf held his interest.
We were in the toy store for almost two hours and we only visited three aisles. For once, we were truly on “Eddie time.” If a toy caught his interested, I asked if he wanted to “have it at home.” Every time he said, “No,” except once. When he played with the toy bird in a cage, as seen in this photo of him, he couldn’t get enough. I asked if he wanted it at home and it was the first “yes” I’d heard all day.
Not only did Eddie get to bring the caged bird home, but I also managed to sneak a bunch of items onto the counter to save for Christmas. By taking time in the toy store, I was able to see him examine a variety of toys. I quickly saw what he took an interest in and what he didn’t like. We really had a great day. We both desperately needed the chance to slow down...and to simply enjoy being on “Eddie time.”