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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

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 Blind Children, packed ample snacks, and embarked on our adventure. Eddie enjoyed the 15-mile ride, and many people stopped to ask questions about his cool bike. He really loved the tunnels and would call out to hear the different echo sounds.

Eddie and his dad riding on a bike on the Hiawatha trail on the Montana/Idaho border with their backs to the camera

I loved being outside with our family and with our friends. I loved feeling like all the other families on the trail, spending time with our kids, and making memories. I was reminded that we can get out and have adventures and that the biggest thing holding us back is us. When picking family outings, we simply need to ask, "How will we include Eddie?" We need to stop asking, "Should we include Eddie?"

Affirmation of this thought came not in the bike ride or the fun group lunch we had afterward. Affirmation actually came during the car ride home. Eddie was sitting in the back seat of our pick-up, and I heard his younger sister, CC, talking to him. What caught my attention was not that CC was talking because that happens all the time; I was surprised because she was talking to Eddie, and Eddie was responding.

CC wanted to sing some songs, and she was asking Eddie which ones. When she got the verse wrong, he corrected her, and she paid attention to him. She started singing songs that required two people to participate, and Eddie joined right in.

I forgot that the greatest benefit of including our kids with special needs is that other kids see them as equals. Even their own siblings. After spending a day riding bikes with Eddie, CC saw him as capable. Not only as a recreation partner but as somebody to play with in the car. As her equal.

You might think that this would come naturally for siblings, but it doesn’t work that way for us. Yes, there are moments, and those moments literally stop time. As CC and Eddie played in the backseat, James and I locked eyes and smiled... and it felt like the perfect day.

Posts from "Raising a Child Who Is Blind"

Advocacy Without Apology

Proximity Does Not Equal Participation

A Day in the Maternity Ward

Growing Up in Therapy

Tears, Language Delays, and Seeking an Answer


Topics:
Autism Spectrum Disorders
Getting Around
Independence
Personal Reflections
Planning for the Future
Social Life and Recreation
Sports

Advocacy Without Apology

Eddie walking on the street using his long white cane with his back to the camera

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 apologize for Eddie is strong... and the feeling is frequent.

However, when I really think about it, that urge and feeling are insane. Do other parents find themselves apologizing for their kids all the time? Do they have to feel bad about needing extra support at school, at home, and in general? How many others think about their kids’ needs and feel the urge to apologize for that cost? The answer, almost none.

Our son is challenging. He struggles with finding the words he needs to communicate. He requires extra time to complete any task. His outbursts are due to misunderstanding and anxiety. When we share our own frustration with Eddie, we hear a quiet, tearful "I’m sorry." I silently cry myself then wonder, "Does he often feel the urge to apologize too?"

Our son’s health care costs a lot. He entered this world on two policies; one private and one provided by the state. He is still dually covered in that way. His medication out-of-pocket would be $3,000 a month without that coverage. He has a preexisting condition. I will not apologize for the cost of his health care and the aide we require.

Our son’s education costs a lot. Learning to read for him means learning braille. He may not read "Moby Dick," but I would like him to read signs, labels, lists, and the steps to complete a task. Braille literacy is crucial for any employment when it comes to individuals who are blind. I will not apologize for that.

As parents, I think "I’m sorry" bubbles to the surface too often. Personally, I feel the weight of our son’s needs every day, and that weight can sometimes be suffocating. If I feel the weight, I know others feel it too, and I feel the urge to apologize for that. Honestly, I don’t want to anymore.

His needs are not negotiable. I’m not sitting at home creating an arbitrary list of demands, wants, and hopes. My demands, wants, and hopes are founded in medical reports, evaluation, research, and expectations. I will not apologize for his needs or for my advocacy.

My new motto is "Advocacy Without Apology," and I hope those of you reading this blog embrace it for your own kids too. Most people I know will read this and think, "Right on!" You are my people. Thank you for advocating for Eddie.

Resources to Help You Advocate for Your Visually Impaired Child

Know Your Rights As the Parent of a Blind or Visually Impaired Child

Being an Advocate for Your Child

What If My Child Has Not Been Assigned a Teacher of Students with Visual Impairments?

When You Have Concerns: Problem-Solving with Your Blind Child's School


Topic:
Autism Spectrum Disorders

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