Why It’s OK I Don’t Look Happy in This Graduation Photo

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“Why aren’t you smiling?” “Aren’t you excited?” “Why aren’t you happy?”

For years, questions like this were directed at me since my facial expressions weren’t matching up with the emotional moments everyone else was experiencing.

I’m now aware it can be a characteristic of being on the autism spectrum, so I’ve developed a standard response to such questions: “This is my happy face.”

For people on the autism spectrum, this is described as a “flat affect,” which simply means their facial expressions often don’t mirror the social environment. So I often appear to have no reaction to emotionally charged situations. If you know a person with autism, then you probably understand how that’s possible because it’s also difficult for people with autism to read facial expressions on other people.

The world I live in is completely foreign to the world most neurotypical people live in. Take nonverbal communication for example. In the world of nonverbal communication, you can assume someone is “saying” something without having a conversation with him or her. Unfortunately, that’s not how my world works. Neurotypical minds can learn something about communication from high-functioning people on the autism spectrum. Verbal communication is extremely important.

A few weeks ago, I graduated with my doctorate degree. My family and I traveled to Virginia for the graduation ceremony. Like most graduations, there are pictures to be taken. I admit, I’m not one for taking pictures, but it wasn’t about me. It was about celebrating the occasion. So I took pictures. 

I had already finished my dissertation, successfully defended it and even received it in the mail a few weeks before graduation. I would’ve been perfectly fine with not walking across a stage in front of thousands of people. The graduation was for my wife who was so happy and my children who were excited to be there. The graduation was also for my congregation who supported me and prayed for me.

On graduation day, more than 17,000 degrees were awarded. I had to file into an enormous football stadium filled with about 30,000 people. Once the commencement began, it wasn’t long but it was loud. The sounds from the stage and from the thousands of voices screaming and cheering were overwhelming for someone like me who deals with sensory overload. But I toughed it out, because I wanted my children to have the experience. I wanted to be happy for those who were happy for me.

So when I took pictures of the experience, my face didn’t seem to match the excitement of the moment. But you have to realize that my being there at all was a nod to my family who wanted to experience the excitement of the ceremony. It doesn’t look like I’m happy, but that’s OK.

Lamar Hardwick the mighty

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When My Daughter With Autism Tells Me, ‘I Wanna Be All Right’

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When my daughter cries out to me, “I wanna be all right,” it stops my world. She wants to be all right? There’s an inner conflict going on inside her head. My child’s brain is paved with unique and atypical neuro-highways. She gets confused about her feelings. She understands her situation should be OK, but somehow it still upsets her. So she cries and wails and says she wants to be all right.

This situation usually happens when she doesn’t get her way. Or her little brother takes her toy. Or she isn’t allowed to eat a snack. Or her mom tries to put on her blue dress. Or those shoes! And what is this pasta thing sitting in front of her?

You may be thinking, “She’s spoiled.” “She’s throwing a tantrum.” “All kids her age throw a fit.” “But you’ve been indulging her,” you think again. “You let her have her way and don’t set boundaries.” Yes, I know this is what you may be concluding when she lies on the ground. In the middle of the store aisle. The cement sidewalk. Even the parking lot has been the setting for our drama. She goes down on her knees like the world is crashing in on her. And the thing is, her world is crashing down on her!

She may understand some social norms, but she does not like all of them. But somehow she’s “supposed” to be OK with them. She’s “supposed” to let it go or go with it. It’s like a war waged inside my child’s brain. And this war I barely understand hurts my mama heart.

“I wanna be all right.” I feel I can’t fix it. I can’t make it better. My heart breaks when she directs the comment toward me, adding “Mama” to her honest and sincere request.

I hope to soothe her. I tell her it’s OK. We can be mad a little bit. Do you want to take a break? Come back and join us. It will be all right. I hope this works. Or on a not so perfect and patient day, I sweep her away and hope to be home in a flash.

She wipes her nose and wipes aways the tears back and tells me, “I’m all right, mudher.”

And I think, a little storm has passed. The sun shines. She’s happy. She’s all right. I want to help her keep that “all right” feeling. But I also want to help her weather through it when it’s not so all right. I want to make sure the sun will still shine on at the end of it. 

I can’t begin to know inner workings of my daughter’s brain. I strive to learn more every day. I want people out there who have little to no idea about autism to be a bit more accepting about families living with autism. You can help make it “all right” by adding your compassion.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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. Check out our “Share Your Story” page for more about our submission guidelines.

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Mom Creates Dolls With Disabilities and Health Conditions So All Kids Feel Included

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A mom from Wyndham Vale, Australia, is taking matters into her own hands when it comes to getting more diverse toys on the market.

Frustrated with the lack of options available to her own children, Maria Kentley, a mother of four, including two children with autism, began repairing old, discarded dolls and turning them into dolls with various disabilities and illnesses, The Age, an Australian newspaper, reported.

Kentley’s repurposed dolls, called Hope Toys, have a variety of disabilities and diseases including Down syndrome, autism and leukemia.

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Photo from the Hope Toys Facebook page.

Each doll comes with a name, a short backstory and any necessary equipment, like a wheelchair or crutches. Then, the doll is packed up and shipped to its future home. Hope Toys dolls can be custom ordered, and Kentley occasionally sells them on eBay with each doll’s proceeds going to a different charity organization.

“With magazines, media, department stores and the Internet constantly bombarding us consumers with numerous images of the ideal look, perfect dolls, perfect body figures, etc., children grow up thinking they will never be good enough in society’s eyes,” Kentley wrote on her website. “Encouraging your child to play with a diverse range of toys and dolls is a great step [toward] helping [them] accept, understand and value their rich and varied world.”

Check out some of the doll she’s created below.

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Matilda with her older sister, Anna. Matilda was recently diagnosed with Non-Hodgkins lymphoma. Photo from the Hope Toys Facebook page.
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Rose and her baby sister, Cherry. Both sisters have vision impairments. Photo from the Hope Toys Facebook page.
Tuscany
Tuscany has Down syndrome and loves playing the guitar. Photo from the Hope Toys Facebook page.
Autism
Photo from the Hope Toys Facebook page.
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Photo from the Hope Toys Facebook page.

To learn more about Hope Toys or place a custom order, head here. To check out more of Kentley’s doll designs, visit the Hope Toys Facebook page.

Related: A Toy Company Is Finally Making Dolls With Disabilities and Health Conditions.

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Dating Someone Else in a Wheelchair Concerned Me. This Changed My Mind.

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I understand all too well the joys of dating as a wheelchair user. How people are interested, but then when they realize that, yes, you do need the chair for all or part of your mobility, they’re no longer interested. I was even told by one man that he “wouldn’t want to take care” of me. Well, who asked you to? I’m extremely independent; even if I need an aide for certain things, very little stops me.

I went on a date on September 24, 2011 with a nice, sweet guy. He was funny, charming, smart and adorable, and he even gave me a rose for our initial meeting at lunch. This was a different situation for me, mostly because Frank was a wheelchair user. I’d never dated anyone who also used a power chair. His chair was the same make, model and color as mine, too! We met through a puppy raiser for Canine Companions for Independence. Frank’s service dog, Bastien, was a black lab/golden cross just like my service dog, Carmel. I always say the dogs hit it off as much as we did.

There are things I learned from dating a man in a chair as opposed to an able-bodied man:

I learned it’s incredible not feeling so alone. When we go out together, we’re a team. When he opens the door for me, it looks like an orchestrated dance! We move around each other and the dogs so well, it’s become almost second nature.

When something went wrong with my chair, he fixed it. My joystick is sensitive and needed extra support. Frank and his brother got the tool box out and repaired it. I thought that was so unique and special. I didn’t need to make an appointment to get the chair fixed. It was done in an hour! He understood being in a chair, so he recognized the importance of my chair working properly.

We get great seats at concerts and ball games!

People tell us how unique our relationship is when they see us out together, how happy they are that we found one another and how we give them hope (in their own relationships).

During the first few months of our dating, I had my concerns. I had uncontrolled seizures at the time, and I’d never had someone else in a chair help me through that scary time. Frank did it beautifully and handled it so well. Since Frank was my first boyfriend in a chair, we were quite the spectacle as we got out of the van. Two service dogs that look similar and the same color chair — people really noticed! I was used to the stares since I was in the chair, but now we were both going through that. We adjusted pretty quickly.

I realized even though Frank couldn’t stand, he could still help me when I needed it. When we go out together, we’re a team. I love the gentleman he is. Even if I could open the door myself, I don’t think he’d let me! I did have to explain to him that this was something new to me, and sometimes I needed a minute to process the feelings of both of us being disabled.  He was sensitive to my feelings and we talked about all of it at length. He helped make my uneasy feelings fade quickly.

Being with Frank is special because of who he is. We share the same Christian values, and we’ve both been through so much, medically. We’ve both had multiple surgeries. Nine months into dating, Frank took me into NYC to a gorgeous restaurant called Del Posto. Once again, he amazed me and showed me something I hadn’t known or experienced before.This five-star establishment’s food, decor and service are things we still talk about three years later. I’d never eaten such extraordinary food. They brought out a chocolate dessert tree, and on a branch was the most beautiful engagement ring!

We will be married two years in October. I sometimes can’t believe how my life has changed from meeting him and all the places we’ve traveled, and how much we laugh and simply understand one another. For years, I didn’t want to date someone else in a chair. I’m so thankful I opened my eyes to see how well we work together and how happy I am that I took a chance and tried dating in a different way.  

It’s amazing what we learn when we keep our minds open.

The Mighty is asking the following: What’s a dating story related to your disability and/or disease that made you laugh, roll your eyes, cry or was otherwise unforgettable? 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. Check out our “Share Your Story” page for more about our submission guidelines.

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When the Internet Judged My Son with Down Syndrome’s Outfit

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This is my son, Parker:

parker2

Looks like a happy little boy, right?

Wrong.

I’ve been informed he will be very angry 18-year-old one day when he finds out his childhood secret. When he’s not playing with trucks and getting about in blue cloth diapers, I’m busy ruining his life by dressing him up in bright colors, letting him choose his own outfits in the morning and watching him try hats on at the grocery store.

Typical. The only hat he's ever kept on his head and it's a stunning shade of lilac. Real men wear PINK!#notafloralonesie#pinkcamouflage

Posted by Parker's Place on Monday, 29 June 2015

I posted this photo on my Facebook page. But it wasn’t until I shared the image in a kid’s clothing Facebook group the true extent of my imperfect parenting came to light. 70 plus comments later, numerous women were removed from the post by admin, kicked out of the group and their comments were deleted.

Over a floral onesie.

The common critique in the dissenters? That I dared to dress a boy in an outfit “meant for a girl.” I sat in my bed drinking tea, regaling my family with the latest comments and updates, which were hilarious to say the least. I won’t re-post them, because they were over the top and don’t deserve the air time, but this is how it ended.

admin

Yes. This really happened. I know.

Now, I’m aware I’m not really the coolest mom around. I don’t drop hundreds on limited-run baby outfits sold secondhand for hundreds. I shop online for kid’s clothing, mainly sticking to the same few brands which have accessories I like. (In this case, a zipper so Parker can’t undress himself.) But I keep a range of colors, patterns and textures in his drawers to give him some freedom of choice and a good range to choose from.

I was so genuinely surprised to see this as an issue I headed back to the website I purchased the outfit to check if there was a disclaimer. Maybe: Restricted For Use By Females Only.

Nope. It is simply named “Natives Print.”

So my question: Why the hate? These comments wouldn’t have been acceptable in any forum if they were addressing his physical appearance. So why is it OK to target the clothes a child is wearing?

I know this may seem like I’m making a mountain from a molehill. But believe me, when I read comments criticizing a 2-year-old’s outfit, I felt the need to press the issue, while celebrating floral prints in all their glory.

My son has Down syndrome. I bet the comment writers didn’t notice that because his face was covered by a glorious lavender felt hat. He is going to grow up jumping hurdles of outdated stereotypes. This issue is a mere drop in the bucket of assumptions I already fight every day and try to raise awareness about. I truly don’t care if he grows up and decides he likes pink Ralph Lauren shirts, or pajamas in a startling shade of fuchsia. Or even those floral shirts all the husbands are wearing.

We’re all aware little boys were once traditionally dressed in red and pink, and girls in blue. Now, that switched around is the social “norm.” God forbid you break the rules. Gender stereotyping is real. It limits choices in the most superficial and ridiculous way. I don’t even know how to put it simpler: Dress your kid in whatever the hell you and they want to wear. And then go put them on Facebook. 

Oh and Internet, don’t judgy. It doesn’t go with what you’re wearing.

parker1

A version of this post originally appeared on Parker Myles

Follow Katrina and Parker on Facebook: Parker’s Place.

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What I Want Others to Know About Avoidant/Restrictive Food Intake Disorder

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“Just eat the food. All I am asking you is to try it,” my father badgers me as I stare at my food. I’d consumed my noodles, and there was a bowl of strawberries dangerously close to my plate.

I raise an eyebrow, an internal dialogue going on in my head. Part of me (the part I call Eddie) is telling me I will only get sick and gag if I try to eat the strawberries. I will only get sick the moment that strawberry touches my tongue. The other part of me is saying, “Just taste it, you won’t gag.”

Every single time I’m faced with trying a new food, this internal dialogue runs through my head. I’m hypersensitive to the taste and texture of foods. It is paired with my eating disorder known as selective eating disorder, also known as avoidant/restrictive food intake disorder. The short version is ARFID. Those who have ARFID can’t just “try new food.” A dialogue, similar to the one I described above, might play through their heads. Imagine going to a restaurant with a five-page menu and finding none of your safe foods. Safe foods are foods people with ARFID feel comfortable with eating because they are familiar with them.

The exact cause of ARFID is unknown. Some believe it is born out of a fear of choking or vomiting. For me, I believe it came from my birth circumstances. Before I was adopted out of Russia at a very young age, the baby food given to me wasn’t good. My parents told me that I was pasty and in general not healthy-looking.

ARFID has only officially been recognized as an eating disorder recently (the DSM-5 addition). It’s not simply “being a really picky eater.” I’m well aware of starving children and am not trying to be “selfish” with my eating choices, so please don’t try to guilt or shame me into eating. I’ll sit there at the dinner table for hours just staring at the food. I’m hungry, but my eating disorder has so much control over me that I simply can’t eat. Picky eaters typically outgrow their picky habits by the time they’re in their twenties. For someone with ARFID, this problem might persist beyond that age range.

From my own experience on social media with groups dedicated to selective eating disorder and ARFID, some people report hypnotherapy works wonders. Some psychologists and psychiatrists also treat this more like an extreme phobia to try to help their patients. It’s possible to get help, but it requires a lot of hard work from the person with ARFID.

I hope people understand that selective eating disorder/ARFID is not just someone being picky. It is a legitimate eating disorder that’s only now getting the attention it deserves from both the media and scientific communities. I also hope someone reading this has a light bulb go off in their head and realizes they, too, are not alone in their eating disorder.

If you or someone you know has an eating disorder and needs help, visit NEDA.org.

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