Monday with Maureen: “When a Friend’s Brave Act for My Son Knocked the Wind Out of Me”

First of all, this post I found on The Mighty was so well-written I just had to share it, because a strong narrative voice and good writing are too delightful to pass up. Second, I may or may not have gotten notably misty-eyed while sitting here in the store, surrounded by toys and bright colors but inexplicably emotional nonetheless, and apparently I’m wishing the same fate on all of you (happy Monday). And third, this account of a mother’s dire situation and how it was met with awe-inspiring kindness makes me want to listen closer to the lives of those around me. I hope it inspires you to do the same.

Author: Jessica, a mom whose story has been told by Carla and Michelle of Hey Little Fighter.

My son, Caleb, is a looker. He’s only 5 years old, but at 36 pounds and nine surgeries, he’s a real head turner. That wasn’t always the case (says his mom who doesn’t believe a word of that). Even at 2 pounds soaking wet and not at all ready to brave the world, he was gorgeous to me. It took my son a few months to look like a real baby, but he came around. That scary NICU place let him out after seven months, and our days of surgeons, scrubbing in and gown-wearing were over. That feeling was actually short-lived but that’s another story.

One day, I found myself the victim of the proverbial rock and hard place. Our medical supplier called to say our coming shipment was denied due to insurance changes (non-fixable by me and with a full one day’s notice!). I’ll spare you the details and just say it was a nightmare. What does any mom in this situation do? My son’s shipment literally contained his nutrition, the one and only thing he “ate,” his tube-feeding formula. After the phone calls, tears and offers to trade kidneys, I turned to Facebook.

In my desperation and spilling of all emotions to a group of moms who would “get me,” I didn’t realize the settings of the group were open. That means all my friends saw my sad, desperate plea for help from other moms who might have extras of this particular formula.

Let me gently remind you — my horrifying problem involved my infant son not getting his only source of nutrition, his specialized formula, to my house. No, I couldn’t feed him something else, and no, I couldn’t buy it myself. A box of six cans was over $200 or more. At the time, it was the only thing he could get through his g-tube, and it was cost-prohibitive for us.

Then there was this friend… Delaware is lucky to have her. 

Remember how everyone saw my hideous post screaming to the winds for help? My friend, Jessica, saw the post and helped in a way that knocked the wind out of us.

Her son was in the NICU facing IUGR (intrauterine growth restriction), liver failure and coagulopathy (a condition that affects blood coagulation), and even so, she showed an incredibly generous and brave heart.

She saw my post and sent the information of the formula my son needed along with our address to several of her friends and family she thought could help. Explaining our situation, she told them if they could buy and send us the formula, to please do it. No yes or no answers needed to her email.  Jessica told them if financially they could help, to just do it. And did they ever.

Let me spare you the ugly-cry details, but that one Facebook interaction fed my son for months. Within two days, boxes of formula arrived at my doorstep.

The brave, generous and incredibly bold act she took upon herself to reach out to others, and even dig out of their own hearts and wallets to help my family — well, that just changed my life. I saw what the power of desire could do for the better. By the time our insurance situation was fixed, over a month had passed. Sometimes I still wonder… what would I have done otherwise?

Years later, I’m still moved that most of the kind souls who helped us in times of need didn’t know us from Adam or had never heard of my son’s medical conditions. (Caleb has short bowel syndrome, pulmonary vein stenosis and hypertension and gastroparesis.) They just sympathized with another hurting human being.

I try to make a difference wherever I go, because I remember that generosity of spirit. It was more than opening their wallet to my family; they opened their hearts to my son’s heart and literally his stomach.

Give a smile, a dollar, a handshake or hug. If it’s in your hand or heart to help, do it. Even in the most unconventional way, you could change a life. Because I’ll never forget that time my friend used Facebook to feed my son.

Monday with Maureen: “When I Need to Leave My Comfort Zone as an Autistic Person”

Whenever you have the chance, visit this blog post on The Mighty, written by John Long about combating the temptation to stay in his comfort zone as an adult on the spectrum.

I invite you to give it a read for two reasons: (1) because Long begins the blog by referencing C.S. Lewis’ The Great Divorce, an excellent reading choice that deserves being bragged about, and (2) because his perspective on life as an autistic individual is one of wisdom, whittled into shape through years of experiences, formative relationships and growth.

My mantra, which my sons are doubtlessly tired of hearing, is that the accommodations for autistic individuals are different but the expectations are not. This translates particularly well to classroom settings, so I may or may not have said it to both my boys on enough occasions to earn the “broken record” accusation. Be that as it may, I will stand by it and say that for anyone to live their life fully, there has to be a balance of knowing what you need, and knowing when you have to experience hard or scary things in order to do more than exist without consequence.

That said, Long’s blog post eloquently describes the experiences of someone managing that very balance day by day. With resolve and willingness to learn, Long’s words can speak into anyone’s life, autistic or not. Seeing the limitations of dwelling exclusively in one’s comfort zone makes it gradually easier to identify when retreating or resting in a safe space offers healthful results versus when it prevents them.

Anyway. Give it a read and consider where your comfort zone could be bent a little for your own good, if personal growth sounds like a good time to you. If not, just track down a copy of The Great Divorce and enjoy that instead. It’s a stupendous book, believe me.

Monday with Maureen: Sesame Street and Power Rangers Paving the Way for Shattered Stereotypes

Julia from Sesame Street

Image: Marybeth Nelson | Sesame Workshops

 

If you’ve been anywhere on social media during the last couple of weeks, chances are you’ve seen the news that both Sesame Street and Power Rangers are debuting characters on the autism spectrum.

Friends, this is huge.

Not only are these significantly popular and far-reaching examples of children’s media, they’re deeply rooted in the pop culture of today’s young children and their parents. Children’s entertainment has the power to invite an impressionable audience into social stories, current events paired with social commentary, philosophical musings, and life lessons. Pretty much anything can be reworked and communicated through fictional stories so that kids might develop deeper empathy for others or absorb new information.

The writers and producers for Sesame Street and Power Rangers are not blind to this. They’ve jumped headfirst into the task of teaching inclusion, understanding and compassion to our children, but just as significant is the fact that their autistic characters are not stereotypical or overly dramatized. Julia, Sesame Street‘s first Muppet on the autism spectrum, is welcomed by the other Muppet cast members as a friend with a unique way of connecting to her neighbors rather than a handicapped victim. Power Rangers‘ blue ranger is depicted as a teen on the spectrum who struggles to balance his newfound galaxy-protecting responsibilities with his attempts to fit in socially and live an anxiety-free life.

These characters illuminate the broadness of the autism spectrum. Individuals on the spectrum can be easily misunderstood or inappropriately treated due to rampant stereotypes, but that stops when actual people are represented as kids and individuals simply experiencing the world, differences and perceived idiosyncrasies aside. Check out these new characters in Sesame Street and Power Rangers, if only to celebrate the fact that children’s entertainment is stepping up its game in showing kids what it means to truly understand and befriend one another.

Monday with Maureen: “Comic Redesigns the Autism Spectrum to Crush Stereotypes”

Comic Redesigns the Autism Spectrum to Crush Stereotypes

This comic strip featured on The Mighty illustrates the nuances of the autism spectrum with more creativity and thoughtfulness than we’ve seen in any other comic! If you have the chance to give it a read, this article offers an intriguing and eye-opening perspective on how different one person’s experience on the autism spectrum can be from another’s.

Author: The Mighty Staff

Rebecca Burgess sees a problem with the way many people perceive the autism spectrum. Her resolution? The comic below. The Tumblr user debuted “Understanding the Spectrum” (below), which gets rid of the linear autism spectrum image (i.e. you’re either “not autistic, “very autistic” or somewhere in between) and replaces it with a round spectrum full of several traits or ways the brain processes information.

“I want people to understand that autistic people don’t all fit a stereotype, and show people the consequences of stereotyping,” Burgess, from the U.K., told The Mighty in an email. “[Stereotyping leads to] underestimating the skills of autistic people or not believing someone [who is on the spectrum].”

The comic, which she released in April for Autism Acceptance Week, has earned her messages from autistic people, parents and teachers, thanking Burgess for helping them explain the spectrum in a more accurate way.

Take a look at “Understanding the Spectrum” below, and let us know how you would describe the spectrum to someone unfamiliar with autism in the comments at the bottom.

explanation of how it's confusing to explain autism

 

graph of how autism used to be described as a linear spectrum

 

linear spectrum for autism doesn't work

phrases being yelled at a person with autism

introduction to colorwheel autism spectrum

further explanation of how to think of the autism spectrum

this spectrum explanation would lead to more acceptance

autism spectrum explained as a color wheel

Monday with Maureen: “Mikaela Sheldt Paints Facial Expressions as an Artist on the Autism Spectrum”

We were totally wowed by this blog from The Mighty last weekend – take a break from your busy Monday and take a look! Mikaela Sheldt, an artist on the autism spectrum, has a refreshing and insightful perspective on the relationship she has with art, especially as someone who processing emotions differently than the majority of her peers. Her work is breathtaking, and her story worth the read.

 

Author: Jordan Davidson

When Mikaela Sheldt was 17 years old, her parents bought her painting supplies – opening the door to a world Sheldt’s mathematically-inclined brain never knew existed.

“Honestly, I wasn’t very interested in art,” Sheldt told The Mighty. “But one day I came home and started painting on my bedroom walls. I think I was 17 or something. It just seemed like a good idea and I went with it.”

Drawing in ink of a man with long hair and a beard.

A physics and mathematics student, Sheldt’s decision to pursue art as a career didn’t come until years after college. “I still continued to study math and physics in college, but art slowly took over my world,” Sheldt said. “I started painting as a way to process all the things I was feeling inside myself. It made me feel better to paint. When I was painting, I felt connected in a way I never had before.”

Sheldt graduated from Agnes Scott College, a women’s college in Decatur, Georgia, and took a job teaching mathematics at a nearby school for refugee boys. Two years later she left teaching to pursue art full-time.

Colorful painting of a woman's face.

Now, the 29-year-old artist focuses on a number of creative pursuits including painting, creative writing and photography. She’s painted large seascape commissions, spent time as the artist-in-residence at a Sonoma County winery and has had exhibits and galleries dedicated to her work.

Still, Sheldt insists she’s not a creative person. “I am not creative, I just see the world uniquely,” she said. “When I paint a portrait or a seascape I am doing so much more than rendering. I am painting the way a subject makes me feel. As a person on the autism spectrum, painting the way something feels has a very distinct meaning. The world is an incredibly loud place.”

Painting of an African American man

Of all the paintings in Sheldt’s portfolio, some of her most striking work are her portraitures – canvases that extend almost from floor to ceiling, featuring intimate gazes and candid expressions. Rather than live models, Sheldt uses photographs to create her artwork, referencing her experience of a person in addition to processing the visual information in front of her.

“A person’s face has in incredibly high concentration of information coming off of it. There are so many things to process all at once, often I can’t look at someone when I am tired because it is painful,” she said. “In my studio, I get lost exploring the depth of all of this information. I become obsessed with decoding and translating all of the stimulation that comes off a person’s face.”

Colorful painting of a woman's face

The whole process, Sheldt said, is exhausting. As a person on the autism spectrum, Sheldt experiences emotions, sounds, smells, weight and texture all at once. “During the day when I’m trying to engage with the world outside my bedroom, it is overwhelming,” she explained. “In my studio, when I’m painting, I get to focus and obsess on one thing at a time. I get to take as long as I want to experience and process.”

The process continues until the painting makes Sheldt feel the same way the paintings subject makes her feel. “I use an immense amount of energy trying to move through a world that isn’t designed for autistic people,” she said. “My painting process is exhausting, but it is also incredibly rewarding.”

Black and White up close painting of a face.

All images featured belong to Mikaela Sheldt.