What I Wish the Old Me Knew About Autism

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.


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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


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

“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.

Screen Shot 2015-01-08 at 12.01.40 PM

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

This post originally appeared on A Life Less Traveled.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

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

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

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

I Know Some of the Most Important People in the World… and They’re Not Famous

I know people.

Yeah, that’s right, I know people.

I’m something special because I know some pretty important people — some of the most special people around.

No, not Beyoncé and not Jay Z or Bono or anyone famous.

I know special people who have to sacrifice everything.

I know special people who have to ignore the stares.

I know special people who have to grieve over the loss of their children.

I know special people who have to wipe tears from their eyes all the time when no one is looking.

I know heroes who painfully worry about someone other than themselves.

I know unbelievably strong people who will never be recognized for what they do.

I know people who matter to the people who need them.

I know people who don’t eat or sleep because of those who rely on them.

I know people who lay awake at night accepting the reality that they or someone they love dearly is going to leave us all sooner than they should.

I know people who will forever be caretakers.

I know real heroes who live amongst us unheralded, unrecognized, under appreciated.

I know the mighty!

Screen Shot 2015-01-08 at 10.38.19 AM

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Why My Son’s IEP Goals Sometimes Make Me LOL

Anyone here ever look at IEP (individualized education programs) drafts and laugh at the goals?

No? Just me?

Now before you rip my head off, keep reading…

I don’t laugh because I think my son can’t do it. I laugh because half of these goals are on my shoulders, and I think, How the hell am I going to pull this off?

iep 1

I have to get my son to do these things. I home/cyber school him, so half the goals are geared towards his therapists, and the other half are geared towards what I have to work on with him.

“No more than two verbal prompts.” Do they KNOW my child?

“On-task behavior for 30 minutes at a time, 80 percent of the time.” With ADHD?

iep 2

I laugh over the ones about licking food — or even about eating it. I laugh because I’ve been trying to get him to do that for years. I’ve been puked on. I’ve had my dinner puked on. Just over getting him to try something new. Food aversions aren’t this easily overcome. I pray the new occupational therapist has a tarp or a parka to keep the puke off her nice work clothes.

Next up we have the self-care goals. These don’t make me laugh. They kind of make me sad. Liam will be 9 in May. He has tied his shoes once. It took a lot of tears to get there. Now he refuses because
“It’s too hard, and I just can’t do it, Mama!” He can’t button. Snapping is a struggle. Zippers? He can’t zip his coat either. If you start it, he can. But he can’t put his coat on and zip and snap it. These goals I pray the occupational therapist can pull off. I pray Liam will do his best for her and learn these tasks. I know it will make him feel so much better about himself. You can do it, baby! Mama knows you can!

iep 3

You know what Liam hates more than tying or zipping? Writing. His cyber school sent me the “Handwriting Without Tears” curriculum. That title is super deceiving. He had tears. I had tears. I
think the dog lying next to his desk even had tears, hearing her boy so distraught. Liam’s reversals and the mix of capitol and lowercase letters are quite bad. Thankfully the OT will be working with him on this. I don’t know how much more my heart can take. Watching your baby struggle day in and day out is hard. Home schooling is definitely not for the faint of heart.

There were a lot of other things in his IEP that broke my heart. For his privacy, I’m keeping that to ourselves. It’s hard to see in writing where your child falls short. It’s hard to swallow.

iep 4

So I guess, part of the reason I choose to laugh at some of these goals, is because other things in the IEP are hard for me to handle.

Then I step back. I look up from my writing, and I see a happy, handsome and fairly healthy little boy busy lining up his comic books and humming to himself. In that moment, I know that no matter where he falls short, no matter where he lacks, he’s happy, and he’s mine, and I love him more than life itself.

iep 5

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

What I See When I Look at My Undiagnosed Daughter

Adelaide is unique. Of course, every child is unique. We learn this in kindergarten as we cut folded-up pieces of paper into snowflakes and listen to a story about how we’re all different and special and bring our own flare to the world. But Adelaide is heartbreakingly unique.

My pregnancy was normal. Our ultrasounds were textbook. Her scheduled December C-section was uneventful. Her hospital tests were unremarkable. She was a quiet, happy baby who latched her first feed and did everything according to schedule. There were a few hiccups along the way, but she was a sweet, content baby. She was slower than her big brother with milestones, but that was just her laid-back personality. My two little snowflakes. But, almost overnight, we went from normal to taking-her-time-with-things to there-is-something-very-wrong.

The whole world stops when you start hearing words. Frightening words. Non-verbal. Bilateral frontal polymicrogyria. Wheelchair. Mega cisterna magna. Hypotonia. Physical therapy. Thinning corpus callosum. Drool bibs. Unknown life expectancy. Colpocephaly. Seizures. No cure. Hearing loss. Flattened pituitary. Leg braces. Vision deficit.

And you see a snowflake cut-out hanging up in a children’s hospital and think, “She was supposed to be unique like a snowflake. Not the kind of unique that makes doctors say they have no answers, that they have never seen another child with her mix of brain abnormalities. Mix. Like a blizzard. I’m in a blizzard now. Lord, please lead the way.”

More than two years after her first MRI and genetic tests, Adelaide still can’t be diagnosed. There is no hyphenated name for whatever happened to her DNA. There are no indicators of future progress. She is completely unique. Her snowflake has an abnormal pattern. Her brain has an abnormal pattern.

She does everything on her own timeline. This child who came into the world at exactly 8 a.m. and nursed every three hours on the clock now sets her own schedule. Some days, she defies what doctors thought possible. Other days, she makes no progress at all.

A unique mix. Drifting where she pleases and causing me to stop in my tracks every day and marvel at her rare beauty. Gorgeous and breathtaking from the moment she was born one December morning.


Read more from this journey on Little House in the City.

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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.