Raising a Child Who Is Blind and...

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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 summer fun, he had little means to participate himself.

Eddie standing with his white cane touching a large gym mat

So, when we had a chance to take him to a summer program for kids more like him, we jumped on it. Although even at this camp, he wanted to do his own thing, he had the opportunity to play just like the other kids, and we encouraged him to do so. There was equipment adapted for him, kids with canes like him, and teachers that understood him, so there was no reason for him to sit to the side.

As we near the start of another school year, this is the thing I fear the most. I fear that he will be put in classrooms with peers, that he’ll sit near them at lunch, that he’ll share schedules with them, but he won’t participate. The fact that he’s in the room, or part of the crowd, simply isn’t good enough for Eddie or his education. He has to be pushed to take an active role in his day.

Children who are blind can easily be content when left alone... in fact, many prefer it. So, the perception is that they are learning just because they are present and because they are quiet. This is not the case for many kids and certainly not the case for Eddie. However, it is certainly the easiest road. He doesn’t want to be pushed or challenged, so he will be quietly content when left alone.

This is why we have to get him out of his comfort zone. We have to expect participation in all things, which leads to greater independence. We have to make sure he’s in classes that have meaning to him, that support his growth, and that also engage him with peers. No, this isn’t an easy task, but the effort will always be worth it.

I challenge all of us this year, parents and teachers, to make sure our kids are participating. Make sure they aren’t just close to where learning happens, but that they are right in the middle of it. Proximity does not equal participation... it only equals the easy way out. I’m sure "easy" is Eddie’s preferred method, but it won’t help him learn, and we can’t accept that.

More from "Raising a Child Who Is Blind"

Growing Up in Therapy

Tears, Language Delays, and Seeking an Answer

Wax Museum and No Man's Land

Gaming Day with Students Who Are Visually Impaired

Accessing an Inaccessible World


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

A Day in the Maternity Ward

Emily Coleman holding her newborn nephew at the hospital

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 rooms. I watched family and friends pace, laugh, and enjoy each other’s company as they awaited news of a successful delivery. I watched multiple small children killing time with caregivers with anticipation of a new addition to their immediate family.

All of this waiting and watching was very nostalgic. I thought to the delivery of each of my three kids. I remembered the loved ones that crowded the waiting rooms... and longed for the ones that have passed since then. I remembered the joy, excitement, pain, and fear that came with each delivery and the moment of sheer bliss that followed. Although I was happy to not be in labor myself that day, I was jealous of the precious newborns each of these new moms would soon hold in their arms.

For those of us that have given birth to children with special needs, you know that there was something else on my mind too. I wondered if any of these families would be met with a surprise. Would they find themselves in the hospital longer than the standard 24 to 48 hours? Would their baby spend time in a Neonatal Intensive Care Unit (NICU)? Would their planned future dissipate in a matter of moments?

As we know, most of the time, the above questions are never considered because all goes well, as it did with my nephew. He’s amazing, and I can’t wait for all the time I get to spend spoiling him. But for some of us, our life does get turned upside down on delivery day or soon after. The future we expected... planned... prepared for is gone, and we are left trying to figure out what that means and what to do next.

I listened to families share news of healthy births. Smiling faces, balloons, flowers, hugs, and the common phrase that these babies had "ten fingers and ten toes." I wanted to shout, "It’ll be OK if they don’t!" Perfection is relative.

Many would fear the birth of a child like Eddie. I don’t blame them because they don’t know what they don’t know. They don’t know that Eddie is perfect. He’s perfectly Eddie, and the perspective and dimension he’s brought to my life and family are beyond what I’d have ever imagined. I don’t know if any of the families I watched that day will experience raising a child like Eddie, but I know they’ll be OK if they do... and their lives can still be perfect.

Raising a Child Who Is Blind with Multiple Disabilities

How Edward Came into the World

Growing Up in Therapy

Tears, Language Delays, and Seeking an Answer

5 Tips for Medically Treating a Child Who Is Blind


Topics:
Autism Spectrum Disorders
Personal Reflections
Planning for the Future

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 impairments weekly instead of quarterly, which was the norm for our rural region. Luckily, she lived nearby and secretly visited more than was directed, which was an extreme blessing for us. For an infant or toddler, the therapists and teachers were enthusiastic and unarguably important.

As Eddie entered the school system, we learned that he would get those therapies from the school. The household of visitors we were now used to phased out and the school staff worked hard but didn’t have much time to work with us. Their enthusiasm was present, and Eddie was making progress, but we began to be left out of the loop.

We kept private therapies and still have a couple, but that was now the burden of our own finances and health care coverage. Luckily, we did have insurance, but this is untrue for many families. Those children rely on the schools to cover their therapeutic needs, and the system is burdened with large caseloads, lack of providers, and rural districts with minimal assistance. So, over the course of a few school years, it's common for therapies to get reduced.

As an educator, I’ve seen many children start off with robust therapies, and as they age, time is reduced until consultation is what remains. I’m not speaking for or against this practice as the decision is made on an individual basis. I’m just saying that over time direct therapy is something that often goes away or is drastically reduced as our children reach middle and high school.

Eddie laying down with his head in his father's lap at the doctor's office

Eddie is reaching the age of asking questions about his therapy, and I’m sure we’ll be faced with tough decisions. Recently, we took him to Shriners (shown in the photo with his Dad) to get braces made due to his orthopedic impairment. He hadn’t been in physical therapy for many years, so we asked the doctor if they felt we should have him reassessed. She asked some very good questions. After which, we came to the conclusion that he did not need to add physical therapy back into his life for now, but we were still able to ask our questions to a physical therapist at Shriners before we left.

As Eddie continues to "grow up" in therapy, I’m sure we’ll have many more discussions just like this. We know Eddie still has much to learn, that part is clear. The unclear part is how/when that instruction should be given and when to make changes for the benefit of Eddie. We’ll look to the professionals to guide us, but as his parents, our "voice" will be the loudest. Simply because, aside from Eddie, these decisions will impact us the most, and we will always know him best.

Working with Your Visually Impaired Child's Medical Team

Working with the Medical Professionals When Your Child Is Blind or Visually Impaired

Dealing with the Diagnosis When Your Child Has a Visual Impairment

Questions to Ask Your Child's Eye Care Specialist

Common Questions Asked by Parents of Children Who Are Visually Impaired


Topics:
Autism Spectrum Disorders
Personal Reflections

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 kicks in for all.

All parents experience these feelings before their children learn to talk. They know what it’s like to stay up all night with a crying baby and not be able to figure out what’s wrong. They know the feeling of inadequacy as they may call their friends, family, or pediatrician. What all parents don’t know is that for some of us those experiences carry on for months, years, and sometimes for a lifetime.

Communication struggles, to me, feel like the greatest barrier for Eddie. Without a way to express himself, he cannot share what he knows and what he doesn’t. He can’t share what he loves or what he hates. He cannot even verbally share affection for those in his life... like me. Instead, we’re limited to body language, memorized phrases, and the occasional unscripted breakthrough. These things are all helpful, but they keep his repertoire small.

I’d love to give him a way to express more with us and the world. Some kids with communication needs use systems with pictures or words and some use iPads with communication apps. Many communication systems that are even slightly complex require sight to access. Braille can make them more accessible, but Eddie only knows a handful of braille. So, what do we do for our kids? What do we do for Eddie?

Eddie in a bright red shirt smiling at the camera

We have used tactile symbols and objects in the past and a few braille key words with success. Now, we want to add more, we want to give him as much access to communication as possible, and we are creating systems ourselves. Even though I don’t know if our latest homemade creation will be successful, we have to try. Without access to communication, Eddie can’t fully speak up for himself... and everyone needs a voice.

So, we carry on and collaborate with speech/language pathologists, teachers of students with visual impairments, and anybody else who takes an interest in Eddie and in his future. Although the frustration can be overwhelming for us, it’s always worse for Eddie. I know that we will find a way to give him a voice, and then, we won’t have to spend any more nights wondering what’s wrong because he will simply tell us.

Communication and Language Development Resources for Children with Multiple Disabilities

Delayed Communication Development in Children Who Are blind or Visually Impaired: A Guide for Parents

Nonverbal Communication in Children Who Are Blind or Visually Impaired

Alternative Methods of Communication: An Overview

Symbol Systems


Topics:
Autism Spectrum Disorders
Personal Reflections
Social Skills

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.

Emily Coleman sitting outside with her back against a flag pole in Jackson, Wyoming

While in Jackson, Wyoming, we spent the days listening to speakers, going on field trips, getting trained to teach archery in schools, and discussing firearm use and safety. We touched on outdoor survival, national parks, stream ecology, and more. We even went white-water rafting. Within every session, I reflected (as in the attached photo taken by my new friend, Trevor) about how to adapt instruction and curriculum for students who are blind.

I know that children who are blind can enjoy hiking, rafting, fishing, and learning about their environment. I know they can shoot archery and even firearms with the proper instruction and modified equipment. (I realize these are very specialized and nobody should try without experienced and certified help.) I also know for certain that the outdoors offers the best place for hands-on learning.

However, as I sat through the workshops, I didn’t readily know how to incorporate much of what I was learning for my own son who is blind due to his additional disabilities. He struggles with hikes because he has an orthopedic impairment. Although he’d love rafting, he wouldn’t necessarily grasp the safety measures required to stay in the boat. Speaking of safety, he’d probably love the experience of firing a bow or firearm, but he wouldn’t understand the dire implications of not following the rules.

My husband and I used to spend time fly-tying, fly-fishing, trap shooting, hiking, camping, and more. We always said when the kids were older we’d get back to it. Yet, the kids are older, and we still hesitate to include them in these things because we rarely know how to include Eddie. However, it seems we have made excuses long enough.

In the world of too much time on devices, we need to get our kids outside...all of our kids, even Eddie. I realize it might mean he isn’t doing exactly what we’re doing in the great outdoors, but he can still benefit from inclusion. The public lands in our country are meant to be used by all of us, and there are no exceptions. As parents of kids who are blind and may have additional disabilities, we need to give our kids opportunities to access natural resources too.

On that note, if you don’t yet know, those with disabilities can get a lifetime National Park pass for $10 that can be used for them and whoever is traveling in their vehicle. Be sure to check it out! If you have other insight into outdoor education and opportunities for our kids, please speak up. We need all the resources we can get!

Outdoor Activities for Children Who Are Visually Impaired

Physical Education and Sports for Students with Visual Impairments

Outdoor Play Tips for Toddlers Who Are Blind or Visually Impaired

Playing with Other Children

Summer Camps and Programs for Children Who Are Blind or Visually Impaired


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