I Can’t See My Reflection. But Thanks to My Son, I Know I’m Beautiful.

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I’m a vampire. I can’t see my own reflection. In fact, I haven’t been able to see it since I was diagnosed with retinitis pigmentosa (RP) in 2008. My son, Asher, has no memory of me with vision. He has always accepted me the way I am. But I haven’t.

One of the toughest things to come to terms with when dealing with RP is the gradual decline in your ability to clearly focus on and define objects. I have struggled with my sight loss, and oftentimes caught myself wishing I could just do some simple tasks again like quickly glancing into a mirror with my own eyes to confirm that my outfit, make-up and hair all appear the way I envision them.

I have learned many adaptive techniques to confidently make myself presentable every day without assistance. But the one thing that has nagged at me is wondering exactly how I look now. I can picture my fashion choices, but I have difficulty comprehending my actual facial structure and physique. Do I still look as becoming as I did the day I first got married or even the day my son was born? My appearance is out of my sight, but it’s most certainly not out of my mind.

Coping with this reality lead me to also doubt my beauty. So for the past year, I’ve made a conscious effort to do some deep soul searching. My search came to a pleasant yet unexpected end one evening during bath time.

While rinsing the suds off my sweet little boy, Asher simply said, “Mom, you should wear that pretty dress again.”

“Which one? I have several pretty dresses?” I asked curiously.

“The one in the picture when you and Daddy got married,” Asher explained.

Then it donned on me that my husband and I had recently gotten a special wedding photo framed, commemorating our 15th wedding anniversary. It was a new addition to our living room. Still, I didn’t realize that Asher had been taking much notice of it.

“What made you think of that?” I asked.

“Because, Mommy,” he replied with the upmost sincerity, “because you’re so beautiful.”

In that instant, my son demonstrated his whole-hearted acceptance for who and how I am.

Through his simple words, I understood that when he looks at me, he sees a loving, caring, giving and capable parent. In short, he sees his mom, not his blind mom. That’s true beauty!

Ever since that memorable conversation, I recognize that my child is a far more accurate reflection of my soul than any image in a mirror could have ever provided. Through the eyes of my child, I learned that it’s not my disability that defines me, nor is it a barrier to who I am as a person.

My limited sight is just one part of how I am, not who I am. It is the light that shines from within me and is reflected in my son’s perspective, which tells me, inside and out, that I’m beautiful!

As a vampire, I may not have the ability to view my own reflection in a mirror. But I’m blessed to have the immortal, unconditional acceptance from my son who sees me more perfectly than I ever did.

April Meredith the mighty

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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12 Reasons This Special Needs Dad Deserves Recognition 365 Days a Year

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Father’s Day is Sunday, and here I am, giving my husband, Dave, dad props — although he deserves them year-round. (Truth: I’m more likely to be found pestering him about taking out the garbage.) Dave is an amazing father to both our kids. But he deserves special recognition for all that he does for our son, Max.

1. Because he regularly caters to Max’s wants and needs, whether it’s taking him on a joy trip to Chicago or a fire station, picking him up at school to go to a doctor’s appointment or just sitting with Max in our minivan in the driveway as he pretends to drive. Oh, and he makes up fun songs, too — cue: “We’re going to Chicaaaaaaago! And we’re gonna have a gooooooood time!”

2. Because from the get-go, he has been a hands-on dad. Even as other friends’ husbands didn’t do diapers, Dave did — and joked about Max’s man-sized poops. He fed Max and still helps him at mealtimes. He gave him baths as a little kid and now, showers. There is nothing this guy won’t do to care for this boy.

3. Because he has always accepted Max for who he is, instead of who he dreamed he would be. During Max’s first year, as I mourned what had happened to him, Dave kept telling me to look at the beautiful child that he was — and reminded me of his potential.

4. Because he has extreme patience for easing Max into new situations, or just hanging with him when Max opts out of an activity.

5. Because he doesn’t sit around talking about how he wishes he could do “typical” Daddy-son things, like toss around a football or play baseball, because he and Max create their own “typical”: They play T-ball, enjoy amusement park rides, go to street fairs and make fart and burp jokes.

6. Because he never gets tired of the physical labor, whether it’s lifting Max into the car (boyfriend is getting heavy!) or carrying Max around the deep end of the pool.

7. Because when Max decides he needs to do something again and again — say, ride the shuttle bus at a resort where we are on vacation or push an empty stroller around the block — Dave will endlessly do it with him, unlike Mommy who will inevitably say, “One more time and we’re done!”

8. Because when Max gets freaked out by a crowd or loud noises, Dave knows just how to kiss and cuddle him calm.

9. Because for years, he’s stayed up late to program words, phrases and photos into Max’s electronic devices to enable him to communicate.

10. Because, better than anyone in our family, Dave understands the importance of hair gel and has taught Max how to swipe it into his hair.

11. Because he loves — genuinely loves — to take Max on food adventures, just the two of them.

12. Because Max has decided that the perfect Father’s Day celebration is a movie (“Inside Out”) followed by bowling and sushi with Daddy, and Dave is happy to oblige. As he always is.

A version of this post originally appeared on Love That Max.

More posts from Love That Max:
Special needs motherhood, pretty much summed up in GIFs
22 free things, services and grants for kids with special needs
The very real monster in the dark

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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When a Customer Asked What Was Wrong With My Shaking Hands

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I expect the friendly concern: “Hey, are you OK? You’re shaking.”

Yup, I’m fine. Thanks for asking.

I welcome the questions: “I have a loved one with cerebral palsy, can you tell me about your experience?” “My spouse and I are looking into adopting a child with cerebral palsy, can you tell us a little bit about what to expect?” “I’m a healthcare student. Can you answer a few questions for me?”

Of course I can. Sincere questions deserve sincere answers. 

But what I cannot and will not accept are the accusations, the demands to know what’s “wrong” with me or even the well-intentioned, but unsolicited “sympathy.” 

Twelve years ago, I was a high school senior looking forward to a bright future. Just a few months earlier, at age 16, a doctor had diagnosed me with extremely mild cerebral palsy. Many people with cerebral palsy need varying amounts of assistance with walking, talking and other things we take for granted. My case is so mild I don’t need any accommodations, besides maybe a little grace from my P.E. teachers when I couldn’t quite keep up with my classmates. The actual diagnosis didn’t really affect my life; My parents and I were just glad to finally have an explanation for why I lacked gross-motor skills, tended to be hyper-flexible (even though that was a perk in dance and cheerleading!) or why my hands sometimes got the shakes. The diagnosis did not change my plans to go to college in the fall or to become a teacher, nor did it discourage me from playing tennis, taking dance lessons or working my part-time job at a department store. 

It was at that department store the following encounter took place: I was ringing up a purchase when I heard the sharp command, “Stop shaking!”

I looked up to see a man, probably a few years older than my own father, staring down at me in disgust.

“How much coffee have you had today?!” he demanded. 

I was 17, and I was supposed to be polite to customers even when they were rude, right? 

“Um, none?” I answered. (To this day, I don’t even like coffee!) 

“Well, what are you so nervous about?!”

Again, all I could reply was, “Nothing.” 

“What’s wrong with you?!”

By now, my heart was starting to race (making the shakes worse, of course), but it wasn’t because of fear. I was angry. How were my slightly-shaky hands affecting this guy? What right did he, a complete stranger, have to know about my coffee habits or any other area of my life? Why should I have to justify myself to him? 

I looked up at him. “Nothing is wrong with me. Would you like the receipt with you, or in the bag?”

Nothing was wrong with me. To this day, nothing is “wrong” with me. I hold a master’s degree and have my dream career. I run and lift weights to stay healthy. I help out with youth group at my church and love to read. I also happen to have mild cerebral palsy. It’s all part of who I am, and I refuse to apologize for it.

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What a Fellow Special Needs Mom Said About Kids Like My Daughter

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Encountering negativity is inevitable, but I feel the chances go up significantly when you have a family member with special needs. I instinctively knew this after my daughter was diagnosed with Aicardi syndrome and we began our new path in the world of disability. I knew we’d encounter uninformed, misinformed and thoughtless strangers along the way. I also knew I could handle the stares, ridiculous comments and discomfort of friends, family and strangers. After all, I think as humans we are generally uncomfortable with unfamiliar situations. We don’t always know how to react in the best, most positive, way. But what I didn’t expect was negativity from other parents of special needs children.

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Age 3

It happened at a parent group in an early intervention center. We met while our children participated in a group therapy session for toddlers. Our children were all nearing the age of 3, meaning it would soon be the school district’s responsibility to provide education and related services for them. The discussion among the mothers centered on preschool programs and was facilitated by a social worker. I typically didn’t say much at those meetings, but I liked the information.

Then, one of the mothers said she didn’t want her child in a classroom with children who sat in wheelchairs drooling. As I sat there hurt and stunned, the social worker giggled and told her she understood how she felt. The mother went on, explaining her reasoning, as I gathered up my bag and left the room to sit in the hall. It was the last parent meeting I attended there. Until my daughter aged out of group therapy, I read a book in the hallway during her sessions.

Looking back, I wish I had talked with that mother. I could have told her children like she described, children like my daughter, could benefit from being in a classroom with her children. I wish I had told the social worker that instead of giggling, perhaps she could have pointed out how beneficial the woman’s child could be to others. With children of different rates of development in the same classroom, they could learn compassion from each other. 

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Age 22

Having someone in a similar situation confront you with negativity is not something you’d expect, but it does happen. Over the past 22 years, I’ve felt it in person, I’ve seen it online and at events with parents of adults with special needs. I try to keep in mind that we are all human, and love our children no matter what their age and ability. We’re never going to like everyone we meet. We can, however, treat each other with kindness and civility, accepting we are all in a different stage of our journey. 

Avoiding negativity is hard, but not perpetuating it is possible.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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My Son’s Autism Helped Make Him an Award-Winning Singer

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In my view, what some may see as my son, Michael’s, disability is, in fact, a different ability.

Temple Grandin, an author who has autism, speaks about how the ability to think in pictures enabled her to become a world leader in the field of animal science. My son, who is also an individual with autism, can remember music as a “recording” that is accurate in every detail.

This ability comes with some challenges. More than one music teacher has reported that Michael sometimes mumbles and appears not to remember his part when first learning a piece of music. Some are baffled. Others are annoyed. Some get it, get past it and have helped to change Mike’s life for the better.

In spite of these challenges, Michael’s talent enabled him to be the only vocalist in his school district to be invited to sing with the New York All-State Mixed Chorus in 2011. Two years ago, because of his musical achievements, Michael was one of 10 individuals worldwide to receive the McCarton Foundation’s Genius of Autism award. He sang on Broadway as part of the awards ceremony. Last year, he was #2 on Autism Speaks’ “10 Talented Individuals With Autism Who Inspired in 2014” list.

When Michael first hears a musical piece, it takes awhile before he feels comfortable singing. If the music is very complicated, it might be a few days before he even tries to sing his part. When he starts singing, it may first come out as a mumble. While all of this this is happening, Mike is absorbing every detail of the music. When this process is done, he’s able to “play” the piece in his mind just like it was a recording.

Once the “recording” is complete, he will always start the song on the right note (he has perfect pitch) and will always sing at the correct tempo. Next, he’ll gradually focus on his individual part and differentiate it from the rest of the piece. Slowly but surely, his voice goes from a mumble to a weak voice and finally to a powerful, resonant voice.

Early on, my wife and I realized that Michael communicated best through music. As a toddler, he would greet people with the da-da-da-dum notes that begin Beethoven’s Fifth Symphony. In his early teens, Michael became very withdrawn, and I began working on songs with him to keep the lines of communication open. Then something unexpected happened. More and more, his own emotions began coming out through his singing. Sometimes he would tear up as he was singing, but he didn’t want to talk about it.

Eventually, Michael began singing publicly. People often come up to him after a performance to tell him how much he has inspired them and touched their hearts. At first, this made him uncomfortable, and after talking to a few people, he would ask to go home. But now, he just smiles from ear to ear and waits to talk to everyone who comes up to him. As an extra bonus, an autism parent comes up to Mike every once in awhile to tell him he has given them hope for their own child.

As for those who don’t “get” Michael, I’ve found that it’s necessary to raise awareness and be optimistic while remaining stubborn. And when all else fails, I’m always ready to become a warrior for my son.

When Michael was in his first year of high school, it was suggested that the mainstream chorale program was not an appropriate setting for him. A new music program was being set up for special needs students. My wife and I were asked if we would agree to place Michael in the special needs music program instead of the mainstream program. We refused.

A year later, a teacher who had believed that Michael shouldn’t be in the mainstream chorale program approached my wife and me and said, “Mr. and Mrs. Korins, I’ll be the first to admit it. You were right and I was wrong.” While we still had our disagreements, this same teacher went on to go out of his way to make sure that my son didn’t experience sensory overload during a school trip to Disney World.

Our son participated in chorale, concert choir and the special needs music program while he was at high school. One year, he was in all three programs at the same time. He thoroughly enjoyed them all.

As an autism parent, my journey with Michael has taught me that if you focus on your child’s strengths, their self-esteem will soar. Once this happens, they’ll be better prepared to take on whatever challenges they may face. And you never know, they just might accomplish something that you never dreamed was possible.

Along the way, I’ve done everything I could think of to inspire my son to focus on his musical talents. But most of all, I want Michael to know that he has inspired me more than I could ever inspire him.

Please watch the video below of Michael singing Sam Smith’s “Stay With Me.”

RELATED: Man With Autism Performs Beautiful Tribute to Paul McCartney

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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When the Doctor Asked Me Why I Adopted a ‘Child Like This’

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The medical community is one in which we spend an above average amount of time. It’s a place I thought would be the most accepting of a child with a disability.

Yet some of the most insensitive questions have come out of the mouths of medical professionals. More often than not, I haven’t been prepared with an answer. Those moments truly haunt me even years later.

I had taken my daughter for her well child check-up with her pediatrician. We adopted her when she was 4 years old, and it shocks many people to know that we intentionally selected a child with cerebral palsy. I get it. In a society where the sentiment to a pregnant mom is always, “As long as it’s healthy,” many can’t fathom choosing this special needs life, but we embraced it. 

I was still completely unprepared when, after examining my 6-year-old daughter, the pediatrician turned to me and asked, “So what made you want to adopt a child like this?”

There were many things I wanted to say, but what came to my mind the most was what my daughter heard. In that moment, I was frozen with panic that responding poorly would scar my child forever. 

I wanted to slap the doctor and ask her what gave her the right to do this to me. To imply my child was less than worthy of my love, to put me in defense of not only my judgment, but my devotion left me speechless. Didn’t she know how hard it can be to foster attachment and provide security to an adopted child without insensitive questions like this? I mumbled something about how we chose her because we wanted a child with special needs. Whatever I said was completely inadequate. I’d never prepared for a moment like that. I was horrified, angry and sad all at the same time. Hot tears stung my eyes as we left. What gave her that right?

Looking back, I think I overcomplicated things. I wanted to explain how we arrived at the conclusion to adopt a child with special needs. I wanted to explain how I knew that I couldn’t change the world, but I had been determined to change one child’s world. I absolutely did want a child “like that” simply because its not right for any child to be anything else than loved and cared for. I wanted to tell her how much progress my daughter had made. I wanted her to know how my daughter did so many things people had told her she wouldn’t ever do, and she was only 6. 

All of those things didn’t sound right to say in front of my daughter, though. I didn’t want to explain away why no one else wanted her and defend why I did.  All of those things made her sound like a less than desirable piece of merchandise and she was a living, breathing, perfect child sitting on the exam room table looking at me. 

The question was wrong because what I believe was assumed  that she was less than desirable — is not true. There was never a need to explain why we adopted our daughter, especially in front of her. The reason why we chose to adopt our daughter was not the doctor’s right to know.

What I wish I could have said to that doctor was, “Well that’s a silly question! We adopted her because we wanted a little girl just like her; we are so lucky! What on earth ever made you decide not to adopt a child like this?”

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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