Raising a Child Who Is Blind and...
by Emily Coleman
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 larger schools, being a student who is blind is very unique. When organizations like our state’s talking book and braille library offer events to get these kids together, it’s best to take advantage.
Due to Eddie’s additional disabilities, I didn’t really know if he’d even participate with the other kids. I wasn’t sure if he’d fit in or if he’d get too upset with his routine being out of whack. As I worried about all the “what ifs” for a few days, I decided asking his school if he could participate would be worth the risks. When the district’s teacher of the visually impaired and paraprofessional agreed to take him, I was impressed with their dedication to Eddie and looking forward to the benefits for all.
Attending with my “work” hat and my “mom” hat on helped me take it all in. I was most impressed with the level of empathy and acceptance shown by all the kids. Many of the students had additional disabilities or were separated by many years of age, and yet, they connected and had fun. Eddie enjoyed spending the day playing games with older kids, and with some coaching from his TVI, I think the older kids enjoyed him too.
Kids were directed to explain to Eddie what they were building in Legos by saying his name often so that he knew they were talking to him. Eddie was then willing to explore creations and listen attentively to those around him. Other students played music or sang songs, and Eddie soaked that right up too. He even played a game of Connect 4, and with some peer support, he continued to be engaged without the guidance of an adult.
Finding Eddie’s peer group isn’t an easy task. However, I couldn’t have been more proud of the kids we met that day. Their willingness to accept him and adapt for him resulted in an excellent experience for them all. Now, if we can only get Eddie to adapt for them... which we will get to, I’m sure.
Again, I’ve had another example of Eddie rising to and surpassing my expectations. It seems I’m always reminded to give him a chance even if I’m unsure. I’m grateful there are dedicated educators and programs out there offering unique experiences like this. As parents, we all need to participate more often, so our kids can reap the rewards.
Raising a Child with a Visual Impairment
by Emily Coleman
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” because he likes to be around people; he seeks us out, but then he just...lingers. It’s like he is proximate to us at all times, but our world is inaccessible. There are moments where he joins right in an activity or a game. But it’s always because he knows the routine. He knows what is expected, what is going to happen, and how he is going to enjoy it.
He knows when Dad yells, “Let’s get Mom!” that all the kids will now try to tackle and tickle me until I’m screaming for mercy. He knows that if his sister, CC, starts wadding up newspapers, we’re going to start throwing them at each other all over the house. He knows that if I’m playing the piano, he’s welcome to sit down and join me, and I always love the company. He knows because we’ve shown him.
For Eddie, accessing an inaccessible world is left entirely up to those who surround him. It’s up to his teachers, his parents, his siblings, and his peers. It’s up to his community to make sure he isn’t left out and to include him in our world. He will always be in our proximity, but proximity alone isn’t good enough.
For children who are blind, we need to find ways to help them access the lives they want. To teach them how to carry on relationships, so they have choices and ultimately satisfaction. I’ve often said I don’t know exactly what I want for “Adult Eddie,” but I know I don’t want him to be lonely. We have to teach him how to access an inaccessible world because the alternative is simply not an option.
Resources for Your Blind or Visually Impaired ChildFamily Life When Your Child Has Multiple Disabilities
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.