Raising a Child Who Is Blind and...

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Pushing Limits and Stepping Back

Emily Coleman with her husband and their three children, standing outside on a porch

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 always impressed with the activity, but once we’ve committed to include him, we do everything we can to help him successfully participate. Unfortunately, not every attempt succeeds.

This weekend, we took him to his younger sister’s, CC’s, first basketball game of the season. When he entered the gym, he became more upset than we’d seen him in a long time. He cried, shrieked, threw things, ground his teeth together, and clenched his fists. We tried to calm him in a variety of ways, without success. In the end, his dad had to take him for a car ride until the game was over... missing out on CC’s first game.

This is where stepping back comes in. Eddie was hysterical, pretty much in crisis, and no efforts on our part were going to change that. We have high expectations, and we push him a lot, but we also recognize when he is trying to tell us "No." He tried. He willingly came along until the noise in the gym, or some other factor, put him past his breaking point. After that, it was up to us to show him he was safe, and he was heard.

As parents, it’s often our job to have the highest expectations. We can push boundaries the farthest because we have parental rights that allow us to take bigger risks. However, it’s also our job to step back sometimes and give our kids a break. That’s our parental right too. They need us to listen to not only their words but their emotions and actions.

When we take a step back, we are building trust. This allows our kids to be "all in" next time so that we can take a giant leap forward.

More from "Raising a Child Who Is Blind"

A Holiday Concert Success

The Perfect Day

Growing Up in Therapy


Topics:
Autism Spectrum Disorders
Personal Reflections
Planning for the Future
Social Life and Recreation

A Holiday Concert Success

Eddie's sixth-grade band playing in a gym at school for the holiday concert

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."

Regardless of his personal playing preferences, Eddie has been in band all year. We knew we’d really learn how it was going when we attended the holiday concert. We were told weeks in advance what songs would be performed, and we could hear Eddie playing them at home. "Dreidel, Dreidel, Dreidel" became daily background music.

To our surprise, when we arrived at the concert, we found him listed as one of many soloists for that song. This quickly explained his nerves. I have never seen Eddie so nervous. Once we sat down in the bleachers of the gym, he immediately asked to go to the bathroom. (One of his "go-tos" for escaping.)

After he returned from the restroom, he sat down and tried to escape again. He grabbed his cane, unfolded it, and stated, "Time for bed," while trying to stand up. This led to many desperate attempts to exit the building. Luckily, once the choir started up (they were on first), he quickly calmed.

When it was the band’s turn, a dedicated paraprofessional approached Eddie and led him to the piano. She gently encouraged him and stayed by his side. When it was his turn to solo, he started off well, and then tapered off. She helped him get through the song so the other kids could pick up where he left off. We all knew he could play that song easily on his own, but as Eddie always does, he decided to "mix it up."

Eddie playing the piano at his sixth-grade holiday band concert

Eddie did great. Instead of sitting in the bleachers or on the couch at home while his class put on an event for the community, he was able to participate. I know this was due to the efforts of many. The band teacher who gave him a chance and keeps doing so. The paraprofessional who sits through sixth-grade band every day... seriously... she deserves an award. Finally, for the students that support Eddie’s involvement and patiently waited for him to complete his solo... in his own way.

Our goals for this night were participation... no public outbursts... and peer engagement. Check. Check. Check. When done, Eddie sat down with us again and enjoyed the rest of the concert. His nerves (and mine) were quickly extinguished. That’s the sign of support. Knowing that his peers (and mine) accept us as we are and continue to encourage his success.

More from "Raising a Child Who Is Blind and..."

Proximity Does Not Equal Participation

The Importance of Relationships

Our Role in Defining Our Kids

Advocacy Without Apology


Topics:
Independence
Low Vision
Personal Reflections
Planning for the Future
Social Life and Recreation

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 at a football game this year, a couple kids came up to Eddie and were chatting. As they walked away, one kid shared to the other that Eddie gave him a "high five" in science class. As they left, Eddie said "Bye" and even included the kids’ name. We couldn’t have told you who they were, but he could. They may not notice all of the different things about Eddie, but he is noticing them.

Near the start of school, one of his classes had an assignment where they had to write down comments for each student. Eddie’s is pictured here. You’ll see the kids called him "awesome," "cool," "talented," and "nice." They mentioned he was good at singing, piano, and percussion. Not one kid wrote "blind" or "autistic" or "upset." Those are the labels adults use... not kids.

An assignment from one of Eddie's classes; his name is written in print and braille on the middle of the page, surrounded by positive comments about Eddie and his skills and talents

The one that really got me was, "friendly to new people." Wow. Think about the "new" kid that wrote that comment about Eddie. Eddie, who has limited language, and who finds it hard to interact, made this kid feel welcomed to their school. As a parent, I’m so proud of that.

I’m also proud that Eddie is giving his classmates exposure to exceptionalities. This is important because of what I mentioned above. They will be in the workforce together. These kids will interview our children for jobs or will work alongside them. If it isn’t our kids, it will be kids like them. There is still extremely high unemployment for people who are blind, and our kids can help change that.

Our kids will teach them that people with disabilities are capable and part of their community. They will teach them that just because a child may be blind, and maybe even Autistic, they can still make a difference. When I wonder about the impact Eddie can make, I now remember that he made a difference for the new kid. I also get excited knowing there are many other kids like Eddie out there changing the world... just by being themselves.

Resources for Parents of Children with Multiple Disabilities

Multiple Disabilities: When a Blind Child Has Other Disabilities

Parent's Perspective: Becoming Part of the Community

The Future Starts Now: Discovering the Possibilities for Your Multiply Disabled Child

Future Employment Options for Your Child Who Has a Visual Impairment and Multiple Disabilities

Raising a Child Who Is Blind and...


Topics:
Independence
Low Vision
Planning for the Future
Social Life and Recreation
Social Skills

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.

Eddie touching a picture quilt hanging on the wall
  1. 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 from day-to-day, but every day he plays at least one and many of these were gifts. Some were of no interest on the day they were received, but over time, he has grown to love and use them all.

  2. A quilt with braille that his grandma Cindy made (seen in photo). Eddie didn’t have an interest in this quilt when it arrived years ago, but now he regularly asks us to read the story about monsters embroidered within as he feels for the braille made of french knots. No, it isn’t perfectly sized braille, but he knows the words, and he knows what they say. To him, that means the most.

  3. The parachute toy has become a favorite. I’d only seen it used in PE or pre-schools until Eddie received one of his own. Now, we use it in our living room with siblings and other kids when we have company. He loves to shake it to music as he feels the wind blowing on his face. Not only does it keep him active, but it also provides social interactions.

  4. Speaking of sensory, swings have always been a hit. He’s had a platform swing for years that has been relocated to school. He also has a swing from IKEA that is like a cocoon that we still have at home. He even has a horse swing made out of tires that we used to work out his core muscles and work on balance. It’s still hanging on our swing set, although he doesn’t love the work-out.

  5. Finally, music-playing technology. He loves the Amazon Echo, and his new favorite phrase is, "Alexa, play some music!" In the past, an iPod touch or iPad was the preferred device, but it’s so much easier to ask Alexa for some tunes.

After writing this out, I’m reminded that many of these items weren’t a hit at first, but they have become his faves over time. This holiday season, we should all try to remember that our kids take time to learn new toys. They sometimes need repeated exposure to find the benefits. I think I’ll challenge myself to continue looking for items that are the "next step" for Eddie.

It’s easy to go with the old stand-bys, but he needs his horizons broadened by us. With many kids who are blind, they are most comfortable with what is familiar. Gift-giving might not always be about giving them what they want, but maybe giving them something new. I’m wondering what items you’ve given your kids who are blind that were a success? Maybe your reflection might help the rest of us out this year too.

Holiday Gift Ideas for Children with Visual Impairments

Toys and Gift Ideas for Children Who Are Blind or Visually Impaired

Holiday Gift Ideas for Children and Teens with Visual Impairments, a Round-Table Discussion

Helpful Products and Toys for Parents of Children with Visual Impairments


Topics:
Autism Spectrum Disorders
Helpful Products
Holidays
Personal Reflections
Planning for the Future
Social Life and Recreation

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 teacher of students with visual impairments completes a Functional Vision Assessment and Learning Media Assessment to describe what that means in the real world.

Yes, a child may have a visual acuity of 20/200, but what does that mean. What can they actually see on the board? How big does their print need to be? How does this impact their ability to make friends and access games at recess? The teacher of students with visual impairments helps our kids’ educational team understand their vision loss beyond labels like Optic Nerve Hypoplasia or Achromatopsia for example.

So, I think that’s our role as parents. We attend IEP and Evaluation meetings, and educators tell us what our kids are and aren’t doing in school, what services they qualify for, and why they may need to be pulled away from their peers. They may say "developmentally delayed." That’s a very broad term and different for every one of our amazing kids. It’s my job to define what "developmentally delayed" really means for Eddie.

Eddie sweeping the living room floor

Our job is to do the "functional" for every aspect of our kids. To say what our kids love to do when they have free time, what chores do they do at home, and how much assistance do they need. How do we know when they are having fun, when they’re nervous, or when they need a big hug? This is our role... to make sure their team understands them and not just their labels.

Most importantly, we must share what we expect of our kids. We have faith in their abilities, hope for their future, and love for them 100 percent of the time. Nobody else feels as strongly about our kids as we do. We must provide the specifics that make them more than their file.

This isn’t always easy. I don’t find myself going to the good things every time somebody asks about Eddie. I first think about what’s hard and what I’m worried about. As of today, I vow to do better. I’ll try not to take the "How’s Eddie" question as an opportunity to share what’s concerning. Instead, I’ll take it as an opportunity to share a little more about him and his personality.

Hmmm, let me practice. If somebody asks, "Hey, Emily! How’s Eddie?" My reply today would be, "He’s doing great! He’s really taking to the keyboard and has suddenly become obsessed with sweeping the living room. He made us laugh today because he wanted me to quit working and took my chair away. He’s such a character!"

Ok, now your turn. How is your child who is blind or visually impaired?


Topics:
Education
Personal Reflections
Planning for the Future