Why Making Choices for My Son Grew Harder After His Diagnosis

1
1

There’s a storm coming into our valley, and it’s windy. We desperately need snow or rain, and I hope the wind is not all sound and fury, signifying no precipitation. Fences and patio furniture have blown over, and on our driveway the feathery evidence of a pigeon having recently met its end by owl? hawk? cat? has disappeared.

When the weather is less than perfect, I walk the dog on the cart paths of a neighborhood golf course. I look for the flags that let me know whether golf is in play or not, and when I don’t see them, we enjoy the winding path and beautifully kept landscape.

Today the flags were up, which was surprising. Why would a golfer choose to play golf in 30 mph winds, with gusts up to 70 mph? For the challenge, maybe?

People who regularly read my blog will remember that I used to work outside the home in a position that required travel. Wind is not uncommon in our valley, and I frequently flew home in windy conditions. I landed at my home airport hundreds of times, and there was usually wind turbulence. It wasn’t anything to worry about; it was just what was normal. Having experienced the pattern over and over, I was familiar with the usual angles, rate of descent, speed, bumps, etc., of a landing.

One night the winds were bad, and the flight was not following the pattern. We were too high for how close we were to the airport, the angle was wrong, the speed was too fast. I was looking out the window muttering to myself “this is not right, this is not right” when the pilot aborted the landing, pulling us up high and hard. We flew back an hour to the airport we’d just left.

Other planes had landed before our attempt, and other planes landed after our attempt. The pilot of our plane was empowered to make the choice whether to land or not, and he’d chosen to abort the landing and return to the airline’s hub airport.

The next flight home was delayed for hours until the wind decreased, and when we finally boarded again, I’d been upgraded to first class. Someone who’d had that seat had chosen not to take the next flight.

Our lives are a mosaic of our choices. To golf or not to golf. To land or not to land. To fly or not to fly. When we make choices we must analyze the relative consequences and benefits of each choice as best we can, though we don’t know the outcome.

We follow the estimation of good and bad results like climbing out on tree limbs. If I do golf, I’ll maybe have an epic game or a maybe a ball will blow through someone’s window. If I do land, we may have a good but rocky landing or maybe everyone’s day will end badly. “Two roads diverged in a yellow wood…

We learn from when choices go well and more often when choices go badly. That 20/20 hindsight is a powerful source of experience. Regret is also a compelling teacher — both the regret for a choice made that you wish you hadn’t made and the mourning of the road not taken, even when the choice made was good.

Over the years I’ve learned to not only analyze the relative consequences and benefits of each choice and draw on my experiences from previous choices, but to also include in decision-making the price of regret and awareness of the mourning.

Since choosing to become a parent, I’ve made choices both as the parent of a neuro-typical child before his diagnosis and as the parent of a child on the autism spectrum after his diagnosis.

The choices made as a parent of a child on the autism spectrum have been harder.

“Why harder?” one might ask. It was the same child, before and after — why would the choices be different?

Our child’s diagnosis required that we see again everything about our child through a new lens. A lens which was unique to him only. We had to redefine our own experiences and could only marginally utilize the experiences of others.

Harder because there was so much less information to draw on to analyze the relative consequences and benefits of each choice.

Harder because the 20/20 hindsight frequently didn’t add to an accumulated experience on which we might draw to make the next choice — there were too many outlier events. The picture was so much bigger than we realized, and it’s taken years to piece it together into a pattern that we can use to support our child.

Harder because the emotional cost of the regret and mourning felt higher.

It’s truly been the road less traveled.

Follow this journey on Autism Mom.

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.

1
1

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

Eddie Redmayne’s Oscars Acceptance Speech Honored ALS Patients

114
114

Eddie Redmayne took home the Actor in a Leading Role Academy Award last night for his performance as Stephen Hawking in “The Theory of Everything.” The film, which follows the life of renowned scientist Stephen Hawking as he grapples with an ALS diagnosis, was also nominated for Best Picture.

This Oscar belongs to all of those people around the world battling ALS,” Redmayne says in his touching acceptance speech below.

Congratulations, Redmayne, and here’s to more awareness surrounding a crippling and devastating disease.

Update: Following the big win, Hawking wrote Redmayne the following congratulations on Facebook.

Watch the trailer to The Theory of Everything here. Check out this post to read more about Oscar-nominated films portraying disability and disease

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.

114
114
TOPICS
JOIN THE CONVERSATION

Julianne Moore’s Oscar Speech Is a Win for Alzheimer’s Awareness

206
206

Last night, Julianne Moore took home the Best Actress in a Leading Role Academy Award for her performance in “Still Alice.” In the film, Moore’s character, a renowned professor, faces a devastating diagnosis of younger-onset Alzheimer’s disease.

I’m so happy, I’m thrilled, actually, that we were able to hopefully shine a light on Alzheimer’s disease,” Moore says in her acceptance speech below. “So many people with this disease feel isolated and marginalized, and one of the wonderful things about movies is that they make us feel seen and not alone. People with Alzheimer’s deserve to be seen, so that we can find a cure.”

Moore’s speech, as well as the film, will help draw attention to the debilitating disease, which currently over 5 million Americans are living with, according to the Alzheimer’s Association.

 

Watch the trailer here, or go here to read more about oscar-nominated films depicting disability and disease.

Want to celebrate the human spirit? Like us on Facebook.

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

206
206
TOPICS
JOIN THE CONVERSATION

Extraordinary Photo Series Shatters Preconceived Notions About Women Amputees

43
43

“Amputee Venus” is a collection of photographs featuring 11 Japanese women proudly wearing artistically decorated prosthetic legs.

Masami
Copyright Takoa Ochi, from the photo book “Amputee Venus”

The concept for the project originated when Takoa Ochi, experienced in photographing athletes with disabilities, teamed up with Fumio Usui, a prosthetics expert in Japan. Usui began referring clients, who were ready to share their stories, to Ochi, and with that, “Amputee Venus” was born. The finished product was released last year and features photographs of women posing and playing sports.

Mika
Copyright Takoa Ochi, from the photo book “Amputee Venus”

The images ooze confidence and poise, but some of the women in these photographs did not always feel so self-assured about their artificial limbs. Yoko Sato, one of the participants, told Reuters she felt hopeless and sad after losing her leg in a car accident and the stigma surrounding amputation and disability didn’t help matters.

“My main aim is to change the perception that disabled people are pitiful,” Sato told Reuters at a photo shoot this past Valentine’s Day. She added that it would be great if people could view prosthetics as fashion accessories, too.

Gimico
Copyright Takoa Ochi, from the photo book “Amputee Venus”

Ochi hopes his photographs will help the negative connotations surrounding the word “disabled” disappear. “Photographs, too, have the power to break down barriers and open doors,” he said, according to the project’s website.

From FB
From the “Amputee Venus” Facebook page

To see more beautiful photographs and learn more about “Amputee Venus,” visit the project’s website and Facebook page.

43
43
TOPICS
JOIN THE CONVERSATION

How My Daughter’s Genetic Condition Made Me Stop and Notice the World

2k
2k

Hey, big girl.

I wanted to tell you that the other day I saw some college students pushing one of their friends in a wheel chair. I watched as they wheeled him past me, and I tried not to stare, but it made me proud.

And then this week I saw a woman in Target who had a disability. She was making her way through her grocery list and had a friend there to help. It was hard for her, but she was doing it. One item at a time, she was getting what she needed.

Seeing them made me think about their journey — the things they’ve had to try hard at and the things they’ve overcome. I thought about their mamas and how they must have held them close like I hold you.

Emmy, you know how Mama told you that having you makes me stop and notice the world? There are things that, in my hurrying, I never noticed before. But now… now I treasure new things. New people. See, Em? You’re already changing me.

emmys-bday

I know that people notice you. They notice how you draw them in with your sparkly eyes. They notice how you say “Hi” (already!) and how you reach out your tiny hand for theirs. They notice how you make them forget there are hard things we will have to conquer.

But you’re doing it, Em! You’re moving and getting stronger, you’re babbling and even saying some words. You’re standing with our help, trying new food, being silly on purpose and pushing your brother away when you’re mad. You’re trying new things and cheering yourself on. There is a strength you’re discovering and my cup overflows. How could I be so blessed?

Keep going, Emmy. You’re doing so well.

This post originally appeared on Dear Emmy.

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.

2k
2k
TOPICS
JOIN THE CONVERSATION

They Said He Wouldn’t Live. He Did. They Said He Wouldn’t Talk. He Sings.

730
730

My son, Matthew, was born premature at only 24 weeks; he weighed just over a pound, and his hopes for survival were grim. He and his twin brother, Brandon, were placed in incubators, where they began their fight. Brandon sadly passed away due to complications from a surgery at only 3 months old.

Matthew remained in an incubator and fought hard. He overcame many of the odds stacked against him, including heart surgery shortly after birth. After many months on life support in the NICU incubator, he was finally ready to come home.

The night before his release he contracted RSV. He became ill, eventually going into a comatose state. He became non-responsive, and we were called in to make a life decision. They told us there was no hope for recovery and stated that even if he were to survive, he would live in a vegetative state. The hospital tried to convince us to terminate all efforts. We refused to do so. We requested he be sent to The University of Michigan Health System. A survival flight helicopter flew in and Matthew was transported with a lung machine.

He remained on a lung oscillation machine in a comatose state for over 30 days. After about five stressful weeks, our prayers were answered when he woke up. Finally, in May, we received the news that our little boy was ready to come home. Not only is he not living in a vegetative state, he’s in a regular school in fifth grade and gets straight A’s.

At an early age, his speech therapist told us Matthew would never speak, and we should look into a computerized communication devise. Well, not only does he speak (and never stops) — but he can also sing.  Just look at his Youtube video:

You can see more about Matthew on his Facebook page, Matthew Peake Romanow. If you’d like, you can donate to our family for Matthew’s medical expenses on his GoFundMe page. Even if you are unable to make a donation, we’d love for you to share his page to spread the word.

Want to celebrate the human spirit? Like us on Facebook.

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

730
730
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.