Why I’m Asking You Not to Cheer for My Son With Autism

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Please don’t cheer for my son, Philip.

I am reminding myself as much as I am asking this of you. I’m just as guilty as you are. I have to stop myself from breaking into a happy dance. While I’m touched you share my enthusiasm for his progress, I must kindly request that you stop demonstrating it.

Please don’t cheer for my son.

I think we can both be forgiven. It’s hard to resist the impulse to say, “Oh, how adorable!” when we see a child do something like a grown-up. Yet, our words and actions aren’t helping my son to learn and grow.

So please don’t cheer for my son.

Think about it. If a clerk at the register says “hello” as you check out, would you say “good job” in response? When your friend says “goodbye” as she leaves, do you clap for her? If I say “thank you” after you’ve helped me out, do you cheer for me?

No? Then please don’t cheer for my son.

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Together, let’s stop treating him like a trained monkey to be rewarded with praise. Just because he touches an iPad to speak doesn’t mean we should treat him as any less than an intelligent human being. Together, let’s agree we need to model language by responding to the content of his communication.

Please don’t cheer for my son.

I also have some answers for you regarding his iPad. No, it isn’t amazing what kids have to play with today. No, it’s not a shame that kids today are spoiled with all these newfangled gadgets. No, I’m not worried my son may never learn to speak.

What do you think he was just doing?

There is an employee in the bakery of our local grocery store who I seek out when we shop there. She waits for Philip to say hello and then responds in kind. She’s patient while he finds the sequence to ask her for a doughnut. She says “you’re welcome” after he thanks her. She talks to him, not about him. Sometimes, because we’re usually there near closing time, she laughs and reminds him not to get fingerprints (or nose prints) on the display case she just cleaned. Using his iPad, Philip says “goodbye.” She smiles, waves and says “bye-bye” back.

She doesn’t cheer for my son.

If you never meet my son, I still ask you to remember these words. Someday, you’ll encounter someone else using some form of alternative and augmentative communication (ACC). It’s OK if this is all new to you. It’s probably OK to ask questions about how it works. It’s definitely OK to talk to that person, listen to what they have to say and respond appropriately.

But unless that person just scored the winning run or offered you a million dollars or announced a cure for cancer, it’s not OK to cheer.

Please. Don’t cheer for my son.

Follow this journey on That Cynking Feeling.

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Why I Won’t Charge More to Babysit a Child With Special Needs

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I recently started watching a little boy with special needs, and people have been telling me I should charge more, even though I’m asking for the same fee I usually request for babysitting. I hadn’t really taken it into consideration. But I realized they were probably right, so I looked online and found out it’s true. I could charge a lot more, but I don’t want to. As I thought about it more and more, I realized charging more to watch a child with special needs — we’re talking developmental needs here, not medical needs, which would be a different service than babysitting — seems to be based on two assumptions I think our society buys into.

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The first assumption is that people with special needs are a burden. We tend to see people with any sort of difference as holding us back. If someone doesn’t think at the same rate as us, they’re wasting our time. If someone doesn’t move at the same rate as us, they’re slow. We forget we made up these rates. We defined what is “typical” and what is “less.”

The second assumption is difficult things are bad, and the easiest road is the best one. If you have to take the hard road, you should be compensated. You’d have a hard time finding a college student who hasn’t used the Rate My Professors website to find the class they should enroll in to put in the least work for the best outcome (guilty). Obviously, it comes in handy and saves a lot of time and energy. But I don’t think we can take something that applies to inanimate things like grades and apply it to people. Some of my favorite friendships are the most difficult ones to be in at times. They ask the hard questions, they challenge me to do things and they hold me accountable. They’re difficult and they’re good. They’re people.

I think the first assumption is based on years of deciding who people should be and what they should accomplish to be considered a worthy part of society. And what’s the reward for being worthy? Being human. Because I think when you decide someone is a burden, you make them less human. That’s truly unfortunate because in taking away the humanity of someone else, I think you’re stripping away a little of your own, too. When we view people as less because they don’t measure up to our typical standards, we also set ourselves up as less in our eyes and in the eyes of others. We all go through periods of relying on others and being relied on, but that doesn’t mean we’re a burden.

I think the second assumption is simply human nature. We process and rank things, but we mindlessly forget this shouldn’t apply to other human beings. This assumption is especially interesting to me because I would never do it while babysitting. I have watched kids who are hard to work with. They taunt their siblings or refuse to eat dinner or cry during homework time. But I have never felt the need to ask for more money from parents because their child demonstrated behaviors that were hard for me to handle. I am compensated for my time. I am never compensated for their behavior.

Please don’t compensate me for your children’s special needs. They’re not a burden. They’re human beings, and I enjoy spending time with them.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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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What I Want the Media to Know on World Cerebral Palsy Day

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I have cerebral palsy, and until I started doing advocacy work, I was unaware March 25 is National Cerebral Palsy Awareness Day (a bill was passed in Congress in 2013), March is Cerebral Palsy Awareness Month or World Cerebral Palsy Day is celebrated each year on the first Wednesday in October. This global event takes place on October 7, 2015 this year.

I never hear any of these announced on TV. Why isn’t the media paying attention?

Maybe it’s because they don’t know about it. After all, I found out on Facebook.  Last year, I watched my local news and national shows, hoping to hear about World Cerebral Palsy Day. I did not. Instead, I listened to Kathie Lee and Hoda discuss National Kale Day (also on October 7) announced on “Today.” A day dedicated to kale trumps World CP Day? This needs to change, so I started a call-to-action campaign to get the media to announce World CP Day on the air — just like they do for so many awareness days or months — dedicated to autism, breast cancer, bullying, and so forth. All of them are important. Cerebral palsy awareness matters, too.

World Cerebral Palsy Day is a movement of people with cerebral palsy (CP) and their families, including the organizations that support them, in countries across the world. Its vision is to ensure that children and adults with CP have the same rights, access and opportunities as anyone else in our society. Robyn Cummins, World CP Day Manager, explains in a 2015 media release (available here):

“Cerebral palsy is the most common physical disability in childhood and is also one of the least understood. There are over 17 million people living with CP and 350 million families, friends and supporters who care about them [according to World CP Day’s website]. But in many countries, people with CP are ‘invisible.’ They live out of sight, out of mind and out of options.”

As the World CP Day website states:

It is time to close the gap between the everyday circumstance and the real potential of people living with CP. Through World CP Day, we will join together to combine our resources, energy and knowledge. We will share our stories and best ideas. We will tell the world … I AM HERE  … WE ARE HERE.”

I wish the media knew that children with CP grow up to be adults with CP. Cover our stories, too. We are productive, talented members of society. And, most importantly, we are not all the same. There are different types and severities of CP — not all of us are in wheelchairs or unable to walk, as is often perpetuated in the media. What I would like to see change is the lack of coverage about CP awareness days, months, etc.

In addition, I urge journalists to change how they describe someone with CP in news stories. Please stop saying we “suffer” from cerebral palsy; this makes it sound like we are all victims of a horrible condition. Yes, there’s no denying cerebral palsy is challenging. It can be hard. How about focusing on the adult or child and her accomplishments instead?

Those of us with cerebral palsy want the world to know we are here. The media can help by announcing, and covering stories for, World CP Day on October 7, 2015 and every year thereafter.

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Why I Say More Than ‘Congratulations’ to My Pregnant Friends

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Recently my youngest daughter turned 1 years old. But as I looked back on pictures from her first days on Earth, I didn’t feel warm inside. Instead, I felt fear — a familiar fear that prickled the back of my neck, making my heart beat accelerate. I should be able to look back on her birth with an overwhelming sense of happiness. I should be able to talk about those days with a smile on my face. But I don’t. I can’t.

Don’t get me wrong, I love my daughter. She’s a beautiful, chubby, soft little ball of love and I can’t imagine my life without her. But our first months together were spent on rough, uncertain seas. And despite the passage of time, I cannot yet look back on them and remember anything but how terrified I was. I hope someday I can.

While we were preparing for her arrival I had a lot on my mind. Will her siblings accept her? How will we survive the teenage years with only one bathroom? Will I go into labor early? Will she have hair, or be bald like her sisters? Will she have her daddy’s big brown eyes? One question I didn’t ask was, what happens if I develop a postpartum disorder? I didn’t think it was something I needed to worry about. Had I known then what I know now, it would have been the first question I asked.

I thought I knew everything there was to know about pregnancy, labor and delivery. Having already gone through pregnancy and delivery twice, with one vaginal delivery and one delivery via C-section, I thought I had experienced it all. Needles, IVs, episiotomies, catheters, epidurals, spinal blocks, breast feeding, bottle feeding, abdominal surgery, gas. I was, I thought, a seasoned professional.

Ignoring a history of anxiety and depression in my family, I couldn’t imagine feeling anything other than love and happiness after giving birth to a baby. Of course I’ve heard about postpartum depression, but my head was filled with stereotypes. I didn’t know anyone who had actually experienced it, and even considered myself to be above it. I thought there was no way it would actually happen to me.

Due to her position, and to my previous C-section, I was scheduled for a repeat C-section at 7:00 a.m., September 16, 2014. I was nervous about getting a spinal block, but I felt calm while I waited, posing for photos in my hospital bed with my oldest daughter and fiancé. One of the nurses even remarked she had never seen anyone so calm. I had no reason to believe this would be any different than last time.

When it was time to head into the operating room, although my nerves started to peak, I didn’t think much of it. But as my heart started racing I felt something terrible building inside of me. A feeling I tried to rationalize, and then tried to ignore – terror. Not fear. Terror. I tried to breathe and wait for it to become manageable, but it never did. It just got bigger with every step I took. I could not, physically, make myself walk into the operating room. Even with the help of several nurses and promises my fiancé could come into the room with me, I dissolved into screams. I started screaming that I wanted to go home, that I couldn’t go through with it, that I was too afraid — I should have known right then that the intensity of my feelings meant something deeper was going on.

I went back to my room and laid down with my fiancé who was able to calm me down. The nurses told me I had a small window of time before I would have to reschedule the C-section. But I had already been in the hospital for hours. I knew I had to do it now.

Eventually, when it was all over, someone held my daughter up. I could see even through my terror that she was beautiful. But the moment I had been waiting for, through nine long months of pregnancy, through the terrifying hours leading up to her birth – it didn’t come. Seeing her didn’t make everything better. Seeing her didn’t make my fear go away. There was no explosion of love that made everything OK. I was still scared.

When they finally wheeled me out of the operating room and back to my room, I was scared. When our family and friends came to visit, when she met her siblings for the first time, my heart still raced. I still felt trapped. My brain was like a TV full of static.  Something was wrong. I didn’t know what, I didn’t know why. I just knew that something was wrong. I did my best to have the necessary conversations with our family; I did my best to smile for pictures like I knew I was expected to. But with every second that passed I felt more disconnected from the real world and more lost in my feelings of terror, which were just growing larger by the second.

I managed to stay in the hospital for around 48 hours before I decided that the problem was the hospital itself. But when we got home I didn’t feel better and the two weeks after the birth of my daughter were without a doubt the worst weeks of my entire life. I’ve never experienced a fear so intense. I hope I never do again.

Though the days felt like years, it was eventually time to go to my follow-up appointment with my doctor. I had, by then, adjusted as well as anyone can to living in a constant state of never ending terror. There was no part of me that connected it to a postpartum issue. I almost didn’t say anything about it to my doctor. But I did. There are a lot of things I can’t (or don’t want) to remember from the days and weeks shortly following the birth of my daughter. But what my doctor said to me will always stand out.

I think you have postpartum panic disorder.

What? I had never heard of it before. He prescribed me anti-anxiety medication, which ended up being like water in a desert to me. Just knowing there was a name for what I was going through, that I would be OK – those things made me feel a little bit better, instantly.

panic baby It wasn’t an easy fix, but my panic attacks dwindled from constant, to just a few a day, to just a few a week, to rare occurrences. Postpartum panic disorder robbed me of so much, but I consider myself lucky to have a few dim good memories. Like how soft skin of my daughter’s face when I put my check to hers, when she was like my little raft in an endless sea of terror and uncertainty.

I often wonder what would’ve happened if I had educated myself about postpartum disorders sooner. Maybe I could’ve recognized what was happening and gotten help sooner.

Now, when one of my friends announces a pregnancy, I usually blurt out my congratulations and follow up very quickly with, “Have you read anything about postpartum panic disorder?” And then I tell them my story.

Having a postpartum disorder changed my life, but if I can educate even one woman it was all worth it. Despite all the stigma that surrounds these conditions, there’s no reason to be ashamed. There’s no reason to feel embarrassed about not feeling the “correct” way after giving birth.

My daughter was immediately adored by all of her siblings. She was born with a head full of beautiful black hair and a red birthmark on the tip of her nose. She has her daddy’s big brown eyes. As for making it through the teenage years with four daughters and one bathroom? After surviving postpartum panic disorder, I can live through anything.

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‘Bionic Model’ and Amputee War Veteran Come Together for Steamy Photo Shoot

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Rebekah Marine, known as the “bionic model,” was born without a right forearm. Brian Taylor Urruela is a war veteran who lost his right leg in Iraq. Together, they’re challenging the way society thinks of people with disabilities.

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Marine, 28, and Urruela, 29, met last week in Deptford, New Jersey, for a photo shoot with photographer Steve Woods, of Csaw Studios.

“I hope this photo shoot opens up dialogue about empowering disabilities,” Woods told The Mighty. “Having one is nothing to be ashamed of. It’s time to raise awareness and shed light on the subject.”

 

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Urruela, from Tampa, Florida, also modeled for photographer Michael Stokes’ book, “Always Loyal.” Marine, from Woodbury, New Jersey, made a splash on the runway at a recent New York Fashion Week show.

rebekah-marine-800 It’s really about opening up the dialogue about disabilities, it’s to stop hiding the disability,” Urruela told People.com. “It’s to stop being ashamed of it and to own it and I think that’s what Rebekah and I both do.”

 

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 h/t People

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Aspiring Model With Autism May Be on the Cover of ‘Women’s Running’

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Kiley Lyall just might make history as the first person with autism to grace the cover of “Women’s Running” magazine.

The 24-year-old runner and aspiring model has autism, mild cerebral palsy and epilepsy and lives with her family in Bourbonnais, Illinois. Recently, Lyall’s mother, Kathleen, entered her into a competition at “Women’s Running” magazine for women who’ve overcome obstacles. The winner’s photo will appear on the cover of the magazine.

She was chosen out of 3,000 people to be one of the 8 finalists.

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Lyall has been running since she won her first relay at Special Olympics when she was 8 years old. After running many 5k races with her mother, Lyall set her sights on the Chicago Half Marathon. She’s now completed that race twice, most recently on September 27.

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Lyall’s favorite thing about running is blending in with other runners and not standing out as having a special ability, her mother told The Mighty.

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When she’s not running, Lyall practices her second passion: modeling. Several years ago she was selected to be in some of the original photo shoots for Changing the Face of Beauty, a campaign advocating for greater inclusion of people with disabilities in advertisements.

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“It just totally changed everything for her,” Kathleen Lyall told The Mighty. “It changed her confidence, she started talking more and she even picked up the camera.”

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The mother-daughter pair now have a photography business together called CurlyGrace photography.

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For Lyall, being on the cover of “Women’s Running” would be a dream come true.

“Being on the cover of ‘Women’s Running’ magazine would mean that I’m just a runner,” she told The Mighty in an email. “I may have a disability, but I am conquering what a lot of women are conquering no matter what they look like and no matter their abilities.”

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When asked if she has advice to offer other athletes with special needs, Lyall had this to say:

“Always go for it, no matter what your disability [is]. You may be slower or more awkward, but if you love doing it and it makes you happy… follow your dreams and goals! You will eventually succeed.”

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Go here to vote for Lyall for the Women’s Running cover, or to see the other women nominated.

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