Mom's Photos of Daughter Spark Debate on What Autism 'Looks Like'
Editor’s note: This story has been removed for not complying with our editorial guidelines.
Editor’s note: This story has been removed for not complying with our editorial guidelines.
When the news broke that “Sesame Street” was introducing Julia, the show’s first character with autism, it sparked important conversations among both families and advocates.
While educating children about autism and acceptance is a huge step forward, one family doesn’t seem to think it’s that big of a deal. Blogger Jennie Baird wrote an article for the New York Times explaining that her 14-year-old son, who has autism, says “The Muppets” already had a character on the spectrum: Fozzie Bear.
In Baird’s post, she writes:
I had never thought of Fozzie that way, but my son had a point. Fozzie is not good at taking social cues; he doesn’t read a room well and he tends to monologue and perseverate (to repeat himself long after the need has passed). He interprets figurative language as literal — remember that fork in the road in “The Muppet Movie?” He has a verbal tic he falls back on, “wokka-wokka.” And he hates to be separated from his hat for no obvious reason.
‘Autistic’ may not be the first descriptor that comes to mind when you think of Fozzie Bear. You would probably describe him as funny, loyal, lovable and tenacious before you would describe him as autistic. And that is exactly what children want, whether they are on the spectrum or not. When labels can serve children without defining them, they leave room for every child, and every Muppet, to be exactly who they are.”
Baird added that she discussed this with other families with kids on the spectrum, and they revealed that the exact same conversation took place in their household.
So here’s a question for our Mighty readers: Are there any other children’s television programs you think have characters on the autism spectrum?
I don’t know if there’s ever a day I don’t hear that phrase at least once. Sometimes I hear it multiple times a day. You look tired. It used to offend me, but now I just respond with one simple answer: “I am tired.”
You see, I don’t just look tired, I am tired. I’m tired almost every time you see me. My face looks exhausted and my eyes are often red because I’m just so tired. But that’s not such a terrible thing. Let me explain why.
Living with autism spectrum disorder means I live life unfiltered. How I experience the world is completely different, and because of that it requires me to pour an incredible amount of energy into surviving each day.
My life is lived in high definition 1080p, all day every day. You may be in 480p, and that’s being generous. Comparatively, my sensory processing issues mean I see, hear, feel and sometimes smell the world in ways you don’t. Your brain probably filters out most of the noise, and visual distractions, and odd smells and odors because it’s just not important enough for you to have to worry about. In a lot of ways your brain manages all that for you, so you don’t have to be overwhelmed.
My brain… not so much. Every day I wake up I step onto the stage of the greatest production of all time. Every day it’s lights, camera, action as soon as my feet hit the floor. My life is the greatest unscripted show you’ve ever experienced; it’s bigger and brighter than Broadway.
Being autistic means my sound crew, lighting crew, stagehands, makeup crew and camera crew are all pretty much under-qualified and unskilled at their jobs. Every day I step onto the stage, the sound and lighting are so bad that it’s borderline obnoxious and at times just painful to listen to and look at. The lights are often too bright or too dim. The spotlight is never in the right place, the house lighting is terrible and all of that impacts my depth perception and facial recognition. Sometimes that’s why I have trouble recognizing people I’ve already met. This means I visually experience things quite differently than you do. It’s actually a lot of work, and sometimes it’s overwhelming.
So I don’t just look tired, I am tired.
My makeup team is usually missing in action. My face looks worn out because I’m unable to hide behind the masks and makeup so many other performers use to hide their true feelings. My face is naked; it says exactly what it’s feeling. It looks tired because it is tired.
I have no stagehands. My brain doesn’t come equip with people to help me understand cues. I don’t always know where to stand, when to enter the stage, when or where to exit the stage or even when to say my lines. I repeat myself a lot, but I didn’t get my script, so usually my one-act play turns into a unique combination of improv, reality TV and stand-up comedy that feels more like a variety show than a Broadway musical. All of this takes a ton of energy.
So I don’t just look tired, I am tired.
My camera crew is not a crew at all. I have one camera, which means I have only one angle, one shot and one view. I don’t get to see the world through multiple perspectives, and more often than not, you don’t get to see my performance from a different perspective either, so it’s hard for you to see me in a different light. You see someone who isn’t excited and doesn’t want to be here, but you only have one angle, one shot of my performance. There aren’t cameras to capture the other sides of me. Yes, it’s confusing for you, but it’s exhausting for me.
So I don’t just look tired, I am actually tired.
But that’s a good thing.
I’m tired because I’ve fought with the passion and the tenacity it takes to step out on that stage full of sensory overload and social anxiety and put on the performance of a lifetime.
I don’t look tired, I am tired but that’s good because I’m doing the heavy lifting. I’m tired because I choose to engage rather than retreat. I’m tired because I know I have something to offer the world, and to bless the world with my gifts I have to give it everything I have.
I don’t just look tired, I am tired, but that’s because I’ve found the courage to be more concerned about my assignment than I am about my appearance.
I’m autistic, and I have an assignment to show the world, to show autism parents, children and other autistic adults that we have a variety of gifts to give to the world. I show up in the work place and the market place, ready to perform no matter how exhausting it is and no matter how unable I am to hide my fatigue. I show up every day ready to perform because the world needs my voice. The world needs autistic voices. When our voice is absent, a void is present.
So yes, I look tired, and yes I am tired, but I’m OK with that because it means I’m leaving it all on the stage.
I may look tired, and I may actually be tired, but I am tired because I’ve also triumphed. I’ve made it through another performance, and I’m excited about doing it all over again tomorrow.
So kudus to all of my fellow autistic friends, parents, colleagues and companions. Keep going. Keeping pushing. Keep performing. The world needs it.
Break a leg,
Some say the origin of “All Hallows’ Eve” (or Halloween, as we refer to it today) goes back to an ancient Celtic festival of Samhain. Celtic tribes believed that the spirits of the dead would come back to earth on October 31. In an attempt to scare the spirits away, the Celtic people dressed up in costumes.
Today, Halloween is more of an opportunity to become someone else. While the “fear factor” is still popular, so is the desire to dress up as your favorite movie character, sports hero, cartoon character or villain. One thing’s for sure — Halloween is a day to be different and sometimes express your love of your most favorite thing or person.
So what’s a mom to do when her son comes to her and announces he wants to be a ceiling fan for Halloween?
My son, Thomas, has always loved ceiling fans. He’s been fascinated with them since he was a toddler. As he became older, it wasn’t just the spinning he enjoyed; he researched everything there is to know about them. By the time he was 6 or 7, he knew all the different brands and colors. He was a huge fan of the ceiling fan collectors on YouTube who share their mutual love of the hobby. He would even make his own videos about the ceiling fans in our house and the houses of our patient and understanding friends and neighbors. I can’t tell you how many times I’ve asked friends if they would mind Thomas taking a peek at their ceiling fans when we visited.
So when Thomas told me he wanted to be a ceiling fan for Halloween one year, I had to make it happen for him. My only obstacle was being the least crafty person I know. And there are no cheat sheet Google images or Pinterest pages dedicated to ceiling fan costumes I could copy from in order to create my design!
So I did my best, and this is what we came up with!
We were the hit of trick-or-treating that year. Everyone stopped Thomas to ask him what he was, if they couldn’t already guess, and he proudly talked to each and every person about what kind of ceiling fan he was. It opened up a conversation for him with everyone. He was excited to talk to all our friends, neighbors and even strangers about his all-time favorite topic. And for me? I was just happy I could make it happen for him.
Halloween is a day to be different from our everyday selves, but what starts as an attempt to be different can sometimes make us all look the same. That Halloween we saw dozens of Batmans, Dorothys, SpongeBobs, pirates, football players and ghosts.
But this I know for sure.
In our neighborhood that year, there was only one ceiling fan.
When you decide to become an autism mommy blogger, you make a conscious decision to put yourself out there. I mean, really out there. For the supporters, the critics, the fans and the haters, you’ve supplied a platform to let you know precisely how they feel about you, your opinion and your words. I have to say, most people who take the time to leave a comment on my blog and my Facebook page are pretty kind. I occasionally get the, “You’re not autistic so why don’t you shut the f up!” or the “Stop whining, no one cares if your kid is autistic!” which makes me wonder why they bothered to read the post in the first place. For the most part though, my commenters are encouraging and kind — especially the fellow moms who “get it.” From them I get a lot of “Thank you for saying what I was afraid to” or “Thanks for putting my feelings into words,” which is the reason I started blogging in the first place.
Of all the comments I get — the good, the bad, the inspiring and the ouch I need a glass of wine to dull that kick in the face — the one that seeps deepest into my psyche is, “You’re so patient. Ryan is lucky to have you”. Um… yeah, sure I am and of course he is… most of the time. It’s so easy to believe I’m a patient, fabulous mother all of the time when what you see as you scroll down your Facebook newsfeed is the highlight reel, which, like most social media users out there, is what I post 99 percent of the time.
You know why? People want to feel good. They want to know their 2-year-old who was just diagnosed with autism five minutes ago is going to be just fine. They don’t want to know their kid may be wearing pull-ups until they’re 8 or that the change of seasonal clothing is like water boarding for your child or how you fell apart at the apple orchard over a stupid bee and threatened to Uber your kid a cab home.
However, when I started “The AWEnesty of Autism,” I promised to be just that: AWEnest. So, today, for all of you who believe I’m a patient, fabulous mom who belongs on a pedestal right next to Mother Teresa (OK, no one has ever even slightly suggested that), I want you to know I fall off that patient-mom pedestal with great regularity. And I fall hard.
Today, I will share the parts you don’t see on the Facebook highlight reel, the unused footage that winds up on the cutting room floor during editing. Moments I’m not proud of, but moments that make me real. I hope by splicing some of my initial cuts into today’s highlight reel you will see that what ends up on the cutting room floor has a place too and that just like me, you understand that being a patient, loving mother doesn’t mean you don’t go batsh** crazy every now and then.
So here you are: seven edits that didn’t make the evening Facebook highlights, but wound up as outtakes for you to see later. When you were ready. Outtakes that are as real and AWEnest as the highlights:
1. After returning home from a horrific morning at his brother’s soccer game, where all the other soccer players’ siblings were playing, running and having a blast while my sensory overloaded 3-year-old was trying to climb back into the womb to escape the whistle, the wind, the sun and the squeals, I looked at him fearing something was “wrong” and out of that fear I said, “Why can’t you be normal like the rest of those kids?” Yep, I said it. The N-word right to my 3-year-old’s face. A face that had not yet been diagnosed autistic, but that was different enough that it struck fear in my heart. I wound up in my bedroom sobbing for thinking it, for worrying about it and for saying it out loud while Ryan continued to line up his Thomas trains, scripting happily away. Yeah, that moment wound up on the cutting room floor, buried deep underneath a floor tile, hoping to never be unearthed again. But for you, I just unearthed it.
2. On the day Ryan turned 8, tired of having to scrape yet one more pair of poopy Buzz Lightyear underwear in the toilet, I looked my beautiful, sweet boy right in his gullible face and said, “It’s against the law to poop your pants after you turn 8.” Yeah, he never pooped on Buzz again, so my awful lie worked, but I may pay for that lie by spending purgatory next to a police officer wearing dirty Buzz Lightyear underwear. At the time, it seemed totally worth it. Place this in the “Unused Footage” pile. please.
3. While still hanging with my BFFs, Denial and Clueless, I wanted Ryan to follow his big brother’s footsteps (footsteps so different from his own), so, not only did I sign my sensory sensitive kid up for soccer, I had to practically sit on him while bribing him with any type of sugary treat you can imagine to put on those God awful clunky, plastic shinguards. Just so he would “fit in.” Guess how well a child with sensory processing struggles “fits in” on a windy, sunny, whistle-blowing soccer field? Ryan should have kicked a goal right at my head. Needless to say, sitting on a 5-year-old trying to make him be something or someone he is not while shoving a Tootsie Pop in his mouth not only is bad parenting, it is not something folks want to see while trolling on Facebook, so the shinguard moments did not make the highlight reel.
4. The innumerable, countless number of times I’ve lost my so called “patience” while doing homework with Ryan typically does not make the highlight reel. Just an aside, Homework, Hades and Hell all start with the letter H. That’s not a coincidence. There were times during homework where Ryan would get so stuck, so confused, so inflexible that his “brain felt like it was on fire.” I would try every trick up my sleeve to try and reach him, to try and help him, but because there was only so much I could take at times, rather than remaining calm and throwing some water on the fire, feeling so frustrated and helpless, I would fling open his bedroom door and run out allowing the air from the open doorway to feed the flames instead. No one wants to see the damage in the wake of disaster.
5. During a bout of the flu, I made the gigantic mistake of telling a bug-phobic kid that he needed to drink more fluids to flush out the virus and then explained that a virus was a teeny tiny bug making him sick. Yeah, I’m an idiot. It wasn’t until the next day that I realized how badly I screwed up once I discovered that a child could physically hold his pee for 36 hours. Yep, 36 hours for fear a bug would come flying out his, well, you know. This dilemma led to hysterical sobbing and tears which necessitated me putting him on the potty and tickling him while he screamed, “The bug is coming, the bug is coming” as the flood gates finally opened. You don’t see that kind of drama on the Kardashians, do you? How many Facebook likes do you think that moment would have received? Still waiting on that dislike button, Zuckerberg.
6. “Put your (insert a few of your favorite obscenities when losing your mind here) coat on right now !” Yeah, that happened. After I spent 20 minutes nicely asking, bribing and begging Ryan to switch from his fall fleece coat to his heavy winter coat. Seasonal clothing changes have never been easy. As I started to lose my patience, after asking no less than 20 times and knowing full well the bus driver was kindly waiting (as she so often did), my tone got deeper, louder and a little crabbier. So, when Ryan looked at me and said, “I won’t put it on until you ask me nicely,” well, that was about all the nice I had left. In the end, Ryan put his winter coat on while looking at me bewilderingly, wondering where his nice, patient mommy went. Then he climbed on the school bus and I went to the gym where I proceeded to sob for 15 minutes in the locker room. “Cut! Let’s shoot that scene again please.” Pretty please?
7. “I swear I am going to Uber you a cab!” Pause. Stares from strangers. “What does that even mean” This was a lovely exchange after an ugly day at the apple orchard. A day where Ryan was so mean, so hurtful to both his little sister Emma and me, that I wound up sobbing between the Jonathan and Golden Delicious apple rows. A day where a bee sent him into a swearing, freaking out meltdown that caused more than a few stares and comments. A day where I watched his sister’s face fall yet again at his hurtful words and the day I explained to him what “Uber a cab” means. In the end, we did not need Uber, but I needed a glass of wine… or two.
Moments that don’t make the highlight reel. Moments that, out of frustration, sadness, and anger often caused by my inability to reach my son, take a toll on even the most loving, patient mothers. Moments that leave a trail of guilt and tears. I get that guilt comes with the word “mom,” but somehow losing your patience when your child has a “different ability” just kind of makes the guilt feel even more soul-sucking.
We all have our not-so-proud mommy moments, regardless if our child has autism or not, because we are human. We are real. We screw up. So for all my supporters, who like and comment on my highlight reel, I’m grateful for your kind words about my mothering, but I want you to know that like most mothers, I lose it from time to time, and that doesn’t make us less. In fact, I think it makes us more. More real, more AWEnest, and in the end, even more patient. We learn from these moments. That doesn’t mean we won’t lose it the next week or even the next day, but we learn that even in our worst moments, we’re trying to do our best.
It’s taken me awhile, but I now realize that no matter how many edits from the moment wind up on the cutting room floor, the end should always make the highlight reel. Because our ending always finishes with love, snuggles and a gentle reminder that Mommy’s frustration always fades away, but my love for him never, ever will.
That’s a highlight worth playing over and over again.
Follow this journey on The Awenesty of Autism.
Ninety-nine percent of the time, I’m firmly in the “autism is beautiful, never easy, but beautiful” camp. I never presume to tell you how the autism in your house should make you feel. Ever. That’s not my job. I know my son Big’s autism isn’t about me, but it kind of is. I’m his mama. He walks around every day with a large piece of my heart. So, when his heart breaks, mine rips open. Today I feel like autism is “brutiful,” to steal a phrase from Glennon Doyle Melton of Momastery.
Yesterday Big had a meltdown, and it was a doozy. (You can read more about it on our Facebook page.) The important thing on his end is that he made it, he moved on. He ended his day and night on a positive, joyful even, note. He woke this morning bright-eyed and bushy-tailed, ready to take on the day.
Here’s the part where it’s about me. I have a meltdown hangover. My head and stomach hurt. I’m tired and feel like one of those nights from long ago when I took tequila shots. My chest has a tightness and anytime my phone buzzes, I panic just a little. I start looking toward the distant future and the one creeping up at a pace I can’t stand. I’m scared of puberty and what it will bring for my kind and gentle boy. Teenagers aren’t exactly known for taking care of the ones with fragile hearts and spirits. I’m scared of impulsivity and boys, and adding autism to the mix of an already combustible cocktail? I don’t know if I’ve got it in me.
Yesterday Big said, “It is all too much, Mama. I can’t do this anymore.” At that moment, my heart shattered into a million tiny pieces. Fighting through tears on the phone, I said, “Yes, baby. Yes you can. You can always do this.” His little voice over the phone was so unsure. So scared and tired. I did the best acting of my life in that moment, not sobbing. Sounding upbeat.
Today, I can’t shake it. I can’t have some hair of the dog and Tex-Mex for this hangover. Time. I just need a little time. This weekend we are due for heavy rains and flooding, which means couch time and seeing my boy be himself — naturally happy and silly and getting on my last nerve. Maybe by Sunday. Sunday morning over cinnamon rolls and coffee, I’ll bet my hangover leaves.
I made this photo today saying Big might very well be the picture of resilience. Maybe that’s the beauty of his autism today. No matter the challenge, he comes back. I should learn from him.
Follow this journey on Autism In Our House.
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