Why I Can’t Imagine Who My Son Would Be Without Autism

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What exactly is autism, anyway? He doesn’t look like there is anything wrong with him. Should we get a second opinion? What if he’s just going through a phase? I’m sure he’ll catch up to the other kids soon. Some kids just talk late. He’s just quirky. I have thought and said all of these things.

Sometimes it feels like it was just yesterday that my son was diagnosed with autism. Other times it’s hard to imagine life before he was diagnosed. Joseph Campbell said, “We must be willing to let go of the life we planned so as to have the life that is waiting for us.” I was so focused on getting Brandon the help he needed that it took me some time to realize that it was OK to grieve. 

Grieving over the life I had pictured for my child doesn’t mean that I’m admitting that something is “wrong” with him. It doesn’t mean that I love him any less, or that our lives are over. Pretending that everything is OK, though, is walking a fine line next to denial.

If I could go back to the day my son was diagnosed with autism, I would tell myself that there will come a point when I could not imagine my child any differently. Don’t misunderstand me–I’m not saying I would wish autism upon anyone. There are varying degrees of severity, and I do wish that my son did not have to deal with the struggles that autism brings. However, if someone handed me a pill that would cure my son’s autism, I would not be quick to snatch it up. I can’t tell you with any certainty that I wouldn’t do it; I’m just saying that it would give me pause.

Even at his young age of 3, he has such a personality. Regardless of the “autism is/is not a disease” debate, there is no doubt that autism is a part of my son. If I were to take that away, would he still by my little Brandon? Would his interests change? Would he still like to play the same games? Would he still have his fearlessness? Would he still laugh at the same things?

It’s not possible to decipher all of his quirks between autism and his God-given personality. 



Yes, autism is a part of who my son is, but it does not define him.  He is just a boy.  He is my boy; and the truth is, I could not imagine him any differently.

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This post originally appeared on Ramblings of a Special Mom.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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How a Dog Helped This Boy With Autism Finally Say the Words His Mother Needed to Hear

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Oliver Smith, a 6-year-old boy with autism, had never said the words “I love you.” Then, he met Lucy.

Lucy is the Smith family’s “buddy dog,” and she is there to help Oliver because, in addition to autism, Oliver lives with epilepsy, cerebral palsy and visual impairment, BBC News reported. Lucy and Oliver bonded at once and have been inseparable ever since.

He opened up to us through her,” Sarah Smith, Oliver’s mother, told the outlet. “He’d never said ‘I love you’ before, but he said it to Lucy after meeting her for 30 seconds. Then after the first month, I phoned him one night, I was away with work, and he said, ‘I’ve got something to tell you mommy. I love you.'”

See Lucy and Oliver together in the video below: 

 

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When a Little Boy Asked What My Picture Cards Are For

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“What are those?” I hear a little voice ask me.

I am sitting in a waiting room. “Those” are mini visual cue cards I use daily at work with kids who have differing abilities. I explain they’re cards that give instructions with pictures instead of words.

“Are the kids learning to read and is that why you need the cards?”

I explain that the kids have differing abilities and are learning and pictures help.

“What are differing abilities?”

I’m still amazed at how willing kids are to learn about the meaning of differing abilities. We just have to make it a priority to teach them. I told him that while people come in all shapes, colors, abilities and sizes, and while we may look, sound or do things differently, inside we’re all very much the same.

I always use myself as the first example. I point to my glasses. I cannot see without them. Everything is fuzzy. I tell him I need assistance to see. I rely on tools like glasses. Some kids I work with have helping tools also. Canes, wheelchairs, walkers, story cards, assistance dogs and other medical assistive devices. I see him taking this all in. He goes on to say he hopes they’ll learn but “I am glad you got those cards and I am glad you got those kids.”

He knows that school let out at 2:30 and it’s 3:15. He asks why I still have the cards on display. I explain that I want to be able to communicate with any kids, and if I happen to be out of school, now I can. I also like when people ask about the cards. It opens a door so I can talk about working with a great group of kids. This little boy smiles and says “cool.” He says he wants to get a set of cards like I have so he can communicate with anyone. I tell him he can always communicate with anyone without words or cards.

Then I feel like the Good Witch Glenda from “The Wizard of Oz” as I tell him he already has the power to do so within him. I lean over and say, “You look a person in the eye, give your biggest smile and wave hello.”

He looks at me in the eye and smiles. And so do I.

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What I Wish the Old Me Knew About Autism

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If I could go back to the day my son was diagnosed with autism spectrum disorder, I would have told myself to invest in Clorox stocks. Haha! One of his stims leaves everything quite messy. But, in all seriousness, I would tell myself, “This is going to hurt. Just accept your beautiful children and get them some therapy outside of school for troublesome issues. It gets easier. Hang on.”

We were stuck in a small town. My then-husband worked at a small rural telephone company. I’d heard of autism; I’d volunteered as a teacher’s aide in the special ed classroom in my high school in 1992. And what I knew of it was terrifying. One young man in my class scooted everywhere. He was capable of walking, but the teachers wouldn’t dare set him off by insisting he do anything he didn’t want to do. I remember my first day watching him and his interactions with those around him. I was told, “Don’t look him in the eye or he’ll attack you!” And I thought to myself, “What is he, a lion? A Rottweiler? There has to be something better than this self-contained building with teachers doing little more than babysitting for these kids.” I’m so glad about how far education systems have come since then, but there’s still a long way to go for many.

Now, I was the one with a child with autism. And I struggled — not because I wanted perfection, but because I wanted understanding. How did it happen? How do I help him do better? What will happen to his baby sister in regards to him? I read everything the Internet and library had to offer on the subject. I spent hours I could have been playing with my kids, trying to find a “cure.”

I went to my doctor for help for myself as I plunged into a deep pit of hopeless depression. He told me, and I quote, “Well just expect that he’ll never love you, and he’ll most likely end up in an institution.” That didn’t help. Thankfully, I already knew the first part was a lie.

I eventually got both of my kids in with the area’s leading doctors. They told me to start with a gluten free/Casein free diet. But they didn’t tell me how to go about this, and I totally botched it. To this day my son doesn’t trust anything I cook. He went from not eating for a week at a time, to only eating white/beige foods that were bought at a fast food restaurant. I’m still trying to regain his trust.

But what I’ve learned along the way has been most important to me.  I’ve learned to appreciate differences. I’ve become way less shallow and self-righteous. My faith has been built up exponentially. My sense of humor has become a little bit off, but I love it. I’ve learned to rejoice in all victories, big and small — they’re really worth it. I’ve learned that one common thread can stitch together an entire tapestry of people from different backgrounds, incomes and beliefs and meld us all into a beautiful masterpiece.

Much love to you all in the beginning dregs of this journey. May you have the faith to see it through, and the sense to enjoy the little surprises along the way.

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The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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My Best Friend’s Final Moments Showed Exactly the Type of Man He Was

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“The future lies sparkling ahead… and we thought we’d know each other forever.” — Sleepers (1996)

Of all my friends, Adam Wight always reminded me most of my mom.

He was almost a foot and a half taller than her and probably weighed twice as much, but there was something about his personality and the conversations we had that always struck me as so Fran Wentinkish.

To Adam, I had the Midas touch. He was always so proud of my life, and much like my mom, the praise he heaped on me was almost to the point of happy embarrassment. I don’t think I ever deserved that kind of adulation from Adam, but it never made me uncomfortable because with Adam (as with my mom), I knew it was real. There was no ulterior motive or feigned praise — just love and true friendship.

When I was in high school, I got Adam one of his first jobs at Cosmo Cleaners, where I was also working at the time. On Adam’s first day of work, our manager, Mr. Kim, pronounced Adam’s name wrong. He called him, “Adams.” I still clearly remember Adam giving me a look, like he knew I’d just won the lottery with a new nickname to tease him with, as high school friends do so well.

Over the years, he earned many other nicknames, including Honest Adam (because Adam couldn’t tell a lie) and Tiny (although he wasn’t, standing 6’4”), but I always remained most fond of Adams. In birthday/Christmas cards, I’d address him as such, and he finally gave in and started signing his cards “Adams” back. 

There was no air conditioning at Cosmo, so on some days, I couldn’t wait for the moment I’d get into my dad’s car to head home. But Adam would kindly decline the ride and run home instead. It was only a mile away, but after standing on your feet for eight straight hours in a humid store listening to customers complain about random stains on their clothes or the level of starchiness in their shirts…well, I think most 14-year-olds would look forward to some rest. Not Adam.

When he was younger, Adam was shy, especially around other girls. He was so shy, in fact, that he came to me for advice on how to talk to the opposite sex. I helped coach Adam through the homecomings and the proms. I even outlined – in bullet point fashion – his exact words when he asked his date to senior prom. 

Adam certainly blossomed in later years, and when he met his beautiful wife, Jill, no Mike Wentink talking points were required. 

I also taught him the art of not arriving on time for school. Adam didn’t drive until he went to college, so during our senior year in high school, I was his main ride. Most mornings were spent in my family’s station wagon, beautifully adored with wood paneling. We’d screech into the parking lot and race against the morning bell to make it to our first class. 

After graduation, we attended different universities and saw each other sporadically during random visits or at home in Springfield during break. After college, I settled into a corporate job in northern Virginia while Adam, a captain in the Army, lived in Upstate New York. 

This was before the dawn of social media, but Adam and I still kept in close touch, and in his sincere way he heaped praise on my achievements at Capital One.  He enjoyed the stories I shared with him about the girl of my dreams that I’d met at work – my future wife, Angela.

In a tribute to how special our friendship was, Adam – unannounced – took the microphone at my wedding and spoke to how proud he was of me and my life. 

I think Adam took my diagnosis of multiple sclerosis harder than I did. I rarely saw or heard bitterness from him, but the day I told him about MS, what it is, how I found out, what the future may or may not hold – he just seemed to be upset at the world.  His words still echo in my ears, “This doesn’t make sense. Mike Wentink doesn’t get MS. It’s not supposed to be this way.” 

Towards me, though, he directed warmth and encouragement, promising support from any end of the world. From Adam, I knew he meant it.

As the years passed and I started writing about life with my disease, Adam would call to check in, to praise my latest post or just to say hi. His new career in real estate brought him to San Antonio periodically and the Wentink house was often blessed his visits. Our children dubbed him “The Thing,” of superhero fame because of how big and strong he was.   

This past summer, my family took a vacation back to Virginia. Part of our trip was spent in Williamsburg. Adam and his family drove from their home in nearby Virginia Beach to see us one night.

It was like old times for Adam(s) and me. We joked, talked about life, marriage and the beauty/chaos of parenthood. Our families ate dinner, visited a candy shop for dessert and then we found an open field in front of the Wren Building on the campus of William & Mary where our kiddos could run around together. Our children became fast friends, much like Adam and I did many years before. His daughter and my son even held a mock wedding ceremony with each other. The children coaxed us into participating; Adam was the father of the bride, and I “officiated” their nuptials.

While our children continued to entertain each other and our wives chatted, I marveled with Adam about how far we’d come. Just two Springfield boys, who married (way) up, both blessed with two amazing children – it was a surreal moment, as both of us basked in the glory of truly living the dream.

We’d come a long way from kicking tape around the floor at Cosmo Cleaners. And the future lay sparkling on the horizon, full of endless possibilities.

One hundred and 37 days later, on November 22, 2014, my dear friend Adam died of a massive heart attack. He was 38.

Early the next morning, as I was leaving on a family vacation for Thanksgiving week, I learned about what happened. As I told my wife, I went numb, lost balance in our room and went to the ground as tears streamed down my face.

Our children came wandering into the room, so exciting to be getting on a plane in just a few short hours. Concerned, they asked if Daddy was all right. I had no response; I tried to smile and hide my sorrow from their quizzical, yet so innocent eyes.

It was a cruel irony – the primary reason for flying out to San Diego for Thanksgiving week was a feeble attempt to overcome the sadness from the recent passing of my mother. We have no family in San Diego; it’s not a Wentink tradition — we were just hoping for a peaceful getaway.

While in California I learned the last few minutes of Adam’s life were spent reading my previous story, “A Tale of Two Treatments.” As I type those words, they are still no easier to digest or understand than they were when his wife, Jill, shared his final moments with me. She said Adam had handed her his phone, told her she needed to check out my latest post and remarked on how I’m such an inspiration to him. A few minutes later, Adam collapsed to the ground and did not survive. 

As we spent the week on vacation, I found myself reflecting, much as Adam did, when he learned about my MS. It didn’t make sense. Adam Wight is larger than life; he can’t be hurt. He doesn’t die at 38. It’s not supposed to be this way.

Adam James Wight leaves behind Jill, his amazing wife of eight years, two beautiful children, Allison (6) and Mitchell (3) and countless heartbroken family, friends and acquaintances who had the pleasure of knowing him, seeing him smile or hearing him laugh. 

Adam gave more than he ever expected in return — a selfless lifestyle to emulate. Even in his final act, he was bringing grace and love into our world, as he showered a friend with high praise from afar.

I will miss you, my friend – you are the one that we can all inspire to be.

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In loving memory of Adam James Wight (1976-2014)

This post originally appeared on A Life Less Traveled.

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9-Year-Old Sports Star Completely Wows Ellen in Must-Watch Interview

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Ezra French, 9, from Los Angeles, was born missing four fingers on his left hand and without a fully formed left leg, according to Sports Illustrated.  At age 3 he had to have his leg amputated, but the athletic kid has never been held back by his disability.

Ezra excels at sports. He he plays basketball, soccer, football, track and field and he skateboards. During his appearance on “The Ellen Show” last month, he said he’s set seven national records and was one of Sports Illustrated’s “Sportskids of the Year.” To top it all off, he has a fantastic outlook on life and is full of positivity and encouragement for others.

“You’ve just got to know that being different is OK,” Ezra tells Ellen in the video below. “And that you can dream it, you can hope it or you can make it happen.”

Watch Ezra French on Ellen in the video below:

h/t Faithit

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