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: “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: “American Girl Resale Store, Girl AGain, Trains Women With Autism”

Not only does this article highlight an amazing organization, it also inspires us to see how powerful our passions can be when we use them to empower others. This blog post on The Mighty reminded us that good things are happening all over, and that anyone can make a difference for people in their community if they tend to the opportunities given to them.

 

Author: Jordan Davidson

When Marjorie Madfis retired after 30 years in the marketing industry, she wanted to do something to help women succeed in the business world – women like her daughter, Izzy, who is on the autism spectrum. In February 2014, she opened Girl AGain, an American Girl resale store that teaches young women on the autism spectrum the ins and outs of running a small business.

American Girl Dolls“American Girl dolls are my daughter’s passion,” Madfis told The Mighty, explaining her choice to open a resale boutique. “She loves the product. Many people turn to her and ask ‘Izzy, do you know what year this is from?’” That passion, Madfis said, helps her interact with customers. Not all of Girl AGain’s trainees are as passionate about the product as Izzy is, though they all are passionate to learn.

Now in its third year, Girl AGain, part of Madfis’ nonprofit organization Yes She Can, Inc., works with nine trainees, ages 18 to 23. Each trainee comes in to the White Plains, New York store for a minimum of two hours per week, with the training program lasting between a year to 18 months. Trainees work with job coaches, volunteers who are trained psychologists and social workers to hone their skills at a pace and environment tailored to their needs.

“The resale business provides a lot of task-based opportunities,” Madfis said. Trainees learn how to collect donated dolls, determine if they are sellable, package the dolls, log products inventory management system as well as learn competitive pricing. “You can’t just make up your own prices,” she added.

The store, which is open from Wednesday to Sunday, also offers weekend workshops with doll-oriented crafts, creative writing programs and other activities. “It’s an opportunity for trainees to do something different and be leaders and help-givers to other children who look up to them,” Madfis said.

So far, the program has trained 28 women, many of whom have gone on to college and other part-time positions. “There are only so many women that can fit into this tiny little place, that we can support in this program,” Madfis said. “We are working on documenting our process and curriculum. I think this model could be replicated across the country to enforce job skills.”

To learn more about Girl AGain, or donate a gently-used American Girl doll, visit Girl Again’s website