To the Anxiety That Makes Life Extremely Hard for My Daughter With Autism

627
627

To my daughter’s Anxiety,

It’s been a while since you and I fell out. Today you made me angry even though I wasn’t your target. You see my daughter is 6 and has autism. It makes her day to day life extremely hard at times as she attempts to navigate the world and find her place. It’s not helpful when you come along and add to the mounting stress she already feels. I know you often tag along with your friend, autism; you seem to be closely connected.

We had a lovely playdate arranged with some close friends in a park we often visit. The school holidays throw her out of her comfort zone but she copes really well with planning. It should have been a lovely day. Plan we did, prompt we did. We talked it through loads and off we went. But some days there just isn’t enough planning in the world and you seem to grab her regardless. My beautiful girl was crying, screaming and kicking the seat in the car. She hit her little brother and she threw whatever she could get a hold of. She refused to get out of the car so we sat there, her crying and her brother unsure. You had her, and you were winning.

I wanted to yell and scream at you, Anxiety. I wanted to rip you out of my daughter and stamp on you a million times for what you do to her. I wanted to swear at you and boy, did I have some select words for you. I wanted to cry, truth be told, because I’m exhausted, overwhelmed and often feel out of my depth trying to do what’s best for her. Trying, as a parent, to make her world as easy and understandable as I can, while also trying to keep her safe. I have to think with and about her 24/7, and when you decide to stop by it’s a hundred times worse. She’s likely to run at any given moment, and it’s scary.

Instead, I wish to thank you, Anxiety. You see, every time something like this happens, it makes me a stronger parent, ready to face you the next time you decide to gatecrash our lives. You know what else? With my help (and maybe a little stubborn attitude) she got out of the car. She had a few moments on the floor waving and kicking her arms in the air and I let her. Why? Because she was releasing you. It seemed like she was angry at the feelings she was having. I know deep down she wanted to see her friends, to go on the swings, to eat the picnic we took with us. After she started to calm, I bent down and gave her a choice – go to the playdate or get back in the car and go home. I was calm and fair, she knew either would be OK with me. And do you know what? She chose the playdate. After a few more minutes of calming down she had a great time. It was a lovely day after all.

Thank you for attempting to take my daughter down today. You’ve shown me she’s not going to let you win, even at the age of 6. She made a choice to put you aside and remind you that you don’t get to rule her life. I would say better luck next time, but I don’t want to suggest I’m offering you a seat our next day out. I will just bid you farewell for today. We’ll see you when we see you. We’ll be ready for you every time.

Yours Sincerely,

Blooming Autism

Follow this journey on Blooming Autism.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

627
627

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

Parents Claim Dance Studio Turned Away Their 8-Year-Old With Down Syndrome

292
292

Anna Winnicki loves to dance. The 8-year-old with Down syndrome has been dancing since she was 2 and has danced with studios for years.

So when Anna’s parents, Tricia and Jason Winnicki, tried to enroll her in a dance studio near their home in Buffalo, New York, they were shocked that the studio turned them away, WIVB News reported. Tricia Winnicki said the studio owner told her the school was unequipped to manage her daughter’s needs.

The Mighty reached out to the dance studio in question for a comment, but has not yet heard back.

“She’s a kid. Every kid should get the same chance to try things and to be a part of things,” Jason Winnicki told WIVB News in the video below. “It shouldn’t matter about a disability. It should be about [letting people] try.”

Anna’s story has prompted a large response from the community. Since the story was posted to the WIVB Buffalo Facebook page on August 13, it’s been shared more than 1,200 times and received hundreds of comments. Many people voiced their support for Anna and suggested other more inclusive dance studios in the Buffalo area.

“Keep on dancing, Anna, you are perfect just the way you are!” one commenter wrote.

The Winnickis say Anna will continue to dance at Center Stage Dance Studio where she was previously enrolled.

Hear more about Winnickis’ story in the video below.

292
292
TOPICS
JOIN THE CONVERSATION

Can Music Help Prevent Seizures?

37
37

A recently presented study suggests the brains of people with epilepsy experience music differently than those without the disorder.

“We believe that music could potentially be used as an intervention to help people with epilepsy,” said Christine Charyton, PhD, adjunct professor and visiting professor of neurology at The Ohio State University Wexner Medical Center, when presenting her team’s research at the American Psychological Association’s 123rd Annual Convention in Toronto.

Charyton and her colleagues studied the effects of music on the brains of people with and without epilepsy, in the epilepsy monitoring unit at The Ohio State University Wexner Medical Center from September 2012 through May 2014. They recorded brainwave patterns while patients rotated between listening to 10 minutes of silence and then songs like Mozart’s “Sonata for Two Pianos” or John Coltrane’s “My Favorite Things.”

Charyton said brainwave activity in people with epilepsy “tended to synchronize more with the music, especially in the temporal lobe, than in people without epilepsy.” Temporal lobe epilepsy accounts for 60 percent of all patients with epilepsy, according to the Epilepsy Foundation. The temporal lobe, where seizures often begin, is also where you’ll find the auditory cortex, which helps the brain process music. The synchronization that Charyton witnessed may suggest that when people with epilepsy listen to relaxing music, it can help prevent seizures. However, the research presented doesn’t suggest music should replace current epilepsy treatments or therapies, but can instead be “used in conjunction” with current seizure prevention methods.

37
37
JOIN THE CONVERSATION

What I’d Like People to See When They Realize I’m Blind

1k
1k

From a young age, my parents taught me that my blindness wasn’t something I needed to hide. Even if accommodating me meant taking more time, doing things differently or making a bit of a fuss, I could and would experience the same things they did. Still, it wasn’t always easy to put into practice.

When I was little, I didn’t often carry my cane, and no one looked twice at the pink sunglasses I wore around the clock. Whether I was running wild at the park, making a mess in the toy store or pestering my older sister, I was often able to pass as just another wound-up kid. But in other ways, my family began to stand out with my constant questions and curiosity and their steadfast refusal to curb the inquisitive, impetuous reach of my hands.

Crowds, long lines and the endless waiting that goes hand in hand with being blind in a visual world tended to make me irritable and overwhelmed. Listening to music and audiobooks on my Walkman was the obvious solution, but my favorite escape involved wriggling into the center of a clothes rack with a Braille book. I could read in quiet comfort, startling unwitting shoppers who happened to part the clothes nearest me.

Though these fixes meant a peaceful afternoon at the mall for my family, they came at a price. Carting around bulky Braille tomes and countless cassette tapes while simultaneously guiding me, often singlehandedly, through the mall’s inherent chaos, wasn’t a job for the faint of heart. And, in the background, dubious fellow shoppers stared, mystified by the little girl who seemed apathetic about where she walked and impervious to the brightly-colored displays begging her attention.

As I grew older, my blindness became more readily apparent to onlookers. I used my cane, and later a guide dog, when I wasn’t walking with a sighted guide. Braille was never far from my fingertips, and since I avoided wearing sunglasses, the involuntary, erratic movements of my eyes were easily visible. But adolescence made me self-conscious, leery of asking questions and touching my way through experiences the way I had as a child. I was uncomfortable being seen in a world which I myself could not see.

Passers-by, behaving as if I couldn’t hear, often asked my parents and friends about my blindness, promised to pray for a “miracle,” cut the prices of the things we were buying and patted me condescendingly on the head. Even without my cane or my Braille, even when I was simply standing still, people always seemed to know. I wondered what I was or wasn’t doing which set me apart so drastically. Perhaps worse were the people who commented that I didn’t even look blind, that you could “hardly tell,” that I was “absolutely beautiful.” It was impossible for me not to believe that they were voicing the polar opposite of what they felt — of what they were truly seeing — just to make me feel better.

 * * *

Typically, ignorance, not rudeness, breeds staring. Now that I’m an adult, I appreciate people with the courage to approach me and ask questions. Our interaction, most likely, began with staring, whether or not I was aware of it.

Staring is a conversation which has not yet found its voice, and, luckily, voice is something I have in spades and am more than happy to share.

* * *

Caitlin Hernandez uses her cane while on Rollerblades.
Caitlin Hernandez uses her cane while on Rollerblades.

Once, as a friend and I walked together, my hand in his, our laughter over some silly story making both our gaits uneven, a man shouted across the San Francisco street, “You two are so cute!”

Once, a friend and I, flushed after a long walk in the summer heat and giddy after a successful choir performance, were scarfing down ice cream and laughing together when an older man came up to our table. He told us we’d made his day, that our happiness was contagious, that he loved how much fun we were having.

Once, seeing a friend holding my hand as we struggled along the sidewalk, weighed down by grocery bags, a man eagerly asked if we were married.

Once, as I sat alone on a bench — cane folded, sunglasses on, Braille notetaker tucked away, doing absolutely nothing — a woman told me she loved my smile.

Sometimes, when people stare at me, they only see blindness. Sometimes they see other parts of me, too: joy, insecurity, excitement, uncertainty. Sometimes they see the whole picture: a person who happens to be blind. But what they see isn’t nearly as important as what they take away. Most days, I’m simply grateful to them for noticing, for seeing beyond their own world in the first place.

1k
1k
JOIN THE CONVERSATION

This Romantic Comedy’s Main Characters Both Have Autism

601
601

A short romantic comedy is playfully addressing the intersection between being on the autism spectrum and the dating world.

Written and directed by Rachel Israel, “Keep the Change” is a 15-minute romantic comedy that tells the story of David (Brandon Polansky), a 30-year-old who works hard to hide his high-functioning autism from the world. At the beginning of the film, David begrudgingly agrees to attend a support group for adults with autism. There, he meets Sarah (Samantha Elisofon), a woman who has autism and a language processing disability. David and Sarah are asked to find a birthday present for another member of their group. Throughout their day together, David questions Sarah’s need for structure and routine, and Sarah questions David’s need to conceal who he is from the world. By the end of the day, the two fall in love.

Israel, who wrote and directed the film as part of her Master’s thesis at Columbia University, wrote the script for first-time actors who all have autism. She told KQED Public Radio’s Film School blog that she wanted to create a well-rounded portrayal of people who have the disorder.

“It was important to me that our film not sanitize these characters just because they have disabilities,” Israel told KQED. “I find such portrayals offensive to people with disabilities. They are not saints just because of a disability. They are flawed and human.”

As of July 2015, the short film is in production to become a full-length feature film. The new version of the story will go further in depth with characters who were introduced in the short film but not fully developed, according to the film’s website.

Watch the entire 15-minute short film below. (Note — includes semi-inappropriate language that may not be suitable for some audiences).

Related: 7 Films That Tried to Accurately Depict a Character With Autism

h/t Autism Daily News

601
601
TOPICS
JOIN THE CONVERSATION

When Epilepsy Caused Me to Forget My Husband

432
432

Imagine looking at your husband and saying, “I’m sorry, I have no idea who you are.”

Yes, that happened.

We’d been married almost five years when I had the tonic-clonic seizure. He knew something was wrong while I was in the hospital but thought it was the after effects of the seizure. I was still acting strange a week after being discharged, but I provided no explanation. He finally said to me, “I know something is wrong. You have to tell me what it is.”

That’s when I told him I had no idea who he was.

themighty_picture2

I went on to say that I didn’t remember meeting him, dating him, marrying him or the house we lived in. He was stunned, to say the least. Then I looked at him and asked whose dog that was. He said she was ours, and I responded with, “That’s not my dog. I’ve never wanted a dog.” There are few things that leave my husband speechless. Needless to say, this was one of them.

Apparently we went on two vacations where we drove over 3,000 miles each time. The first one included Dallas, New Orleans, Pensacola Beach Island, Atlanta and then back home to Lexington. The second was in the opposite direction and included Niagara Falls, Ontario, Boston, New York, Washington D.C. and then home. I remember nothing from either of these trips. We tried looking through pictures and videos from the trips but still no memories surfaced. We looked at a picture that had myself and a girl in it. I asked him who she was, and he responded, “That’s your sister.” Now I was the confused one. I remembered that I had a sister but didn’t recognize her in the picture. This is how we learned about “memories without context.”

We’ll be out somewhere and someone will come up to me and start talking to me or hug me like they’ve known me my whole life. I turn towards my husband in terror because I have no idea who they are. These are people we’ve been friends with, worked with, went to church with, etc… He gives me a little more information to see if it will jog something in my memory, but it doesn’t. I just shake my head, and he understands I don’t remember. He then explains the epilepsy diagnosis and subsequent memory loss. The reactions vary from confusion, shock, apologetic to literal disbelief — as in they think I’m lying. What’s worse is if we meet them again an hour later, the next day, next week or longer, there’s a good chance I’ve forgotten them again.

After talking to my doctor and researching, we learned this is fairly common with epilepsy but especially for someone like me. Epilepsy takes a toll on the brain and entire body. Living with it untreated for 43 years was especially taxing. My brain was in survival mode for years. It was doing its best to keep me alive while a constant electrical storm was raging. Memories are just another thing that took a backseat in the brain’s order of operations. It was chipping away at the memories the entire time, but I wasn’t aware. So, when the climax finally came in the form of the tonic-clonic seizure, the memory bank was wiped out.

My husband kept trying to help me remember. It was stressful for him. I had the luxury of not remembering; he didn’t. He remembers everything: our meeting, dates, wedding, vacations, etc… He also remembers the day it all was taken away and the painful aftermath. Little did he know, it was stressful for me too. I didn’t remember the life we had or the seizure that changed it. I wanted to and I tried. I went through the entire human emotional cycle. I became angry, depressed and desperate. I even thought about leaving him and starting over by myself. That devastated us both, but I didn’t know what else to do. I wanted to run away from it all. This wasn’t my life. I had no idea where I was supposed to be, but I knew it wasn’t here. I wanted out.

After a few more appointments, the doctor explained that the memories were gone forever. He said we needed to let the past go and start completely over. Most men would have let their wife go if she forgot them. Not mine. He said I was worth fighting for and he wasn’t giving up that easy. So he literally asked me out on a date. I accepted. He’s even asked me to marry him again, but I haven’t decided yet. So far, all indicators point towards him being a keeper.

He tells me stories about us. Some are funny. Others are sad and scary. I like to hear them though. The memories are gone forever, but he will keep them alive for both of us. Even when he has to tell me the same stories again today because I forget he told me yesterday.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

432
432
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.