Why I Have a Love/Hate Relationship With Autism

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A letter to my son’s autism:

Before I had you, I worked in public schools with all kinds of special needs children. I thought, “Thank God that is not me,” or “I could never do that.” Then you came into my life. Snuck into it, really.

I would “cure” my son of you in a heartbeat. While it’s hard, frustrating and exhausting at times, there’s a different side to it as well. First off, let me tell you a bit about my son. He’s going to be 9, he’s completely nonverbal (but does use a cool device to talk), is partial potty trained and at times elopes (a fancy word for him escaping the house and scaring us spit-less since he has no safety awareness whatsoever).

Yet I’ve learned to be patient in the most extreme of times. I’ve learned not to take anything for granted — not a hug, not a smile, not a word uttered, not my children’s friendships and not the kindness of others. And that includes my other children. It makes me appreciate what they go through and even better understand their issues. Through classes and other means I’ve learned tools to deal with things in a different, more caring manner, even though I’m not a patient person by nature.

It’s taught me extreme differences make a better world, a different world and can make people better.

I’m now an advocate for the disabled and anyone who needs it. I took a class called “Partners in Policymaking,” which is put on by the Minnesota Governors Council for Developmental Disabilities. It taught me how to be a more effective advocate. The class is in around 33 states and for those with disabilities and those with children or family members with disabilities. I highly recommend it. There, I made all kinds of friends and learned to be even more patient and to listen. Our group was able to see and celebrate with a cognitively delayed woman as she advocated for herself. She was able to move from a home she hated into a shared apartment with supports.

I now have friends I never would have had. And these are real friends. Not the ones who will stab you in the back or take offense at the slightest comment. Ones who actually love me, and I’m not easy to love. I have a strong personality, and I make no apologies for it.

It’s taught my children there’s another world out there and even more careers than I knew existed full of caring people. It’s taught them that people with disabilities have value. It’s made them stronger because at times I can’t attend to their needs right away when I’m helping their brother. That’s a hard one for me. I can’t walk my daughter to her bus in the morning — she’s now in first grade. I’m lucky her bus stop is around the corner from our home and I can see it from the window. Autism has helped make her strong and independent.

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I have to say… I have a love/hate relationship with autism.

For all of March, 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.

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About That ‘Disabled or Not, We Have Each Other’ Meme

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unnamed (10) It was just a silly, innocent picture someone posted on social media.

They truly meant no harm by it. I know they just wanted to make people laugh, and they did. In the photo, one person posed with a walker, one with a cane, and someone else sat in a wheelchair. The caption of the photo read something along the lines of, “Disabled or not, we have each other.” 

Is there anything wrong with that? No. They were using these devices as part of a class assignment in their college course; I assume the point of it was to experience what living with a disability is really like, at least for a little while.

I’m a 20-year-old girl, and I rely on all three of those devices to move about the world. The comments people wrote about the photo simply surprised me, and I’d be lying if I said they didn’t make me at least a little bit sad. People wrote things like, “Crying laughing X 3” “Hilarious!” “I’m crying [laughing]” and “That’s a good look on you.”

I really do get it. We all laugh at silly things. However, I know what it’s like to not just pretend to have a disability. I’ll tell you a little secret: it really can be hilarious and fun living with those devices as a part of life. And I relate to the “crying laughing” feeling when one of my friends or family members says or does something so funny that actual tears start running down my face. 

I love to shop, and I’d like to try to think that this whole disability thing is a “good look” for me. Currently, I’m working hard to achieve the perfect “walker” look, and I think I’m getting the hang of it. It’s nerve wracking for me to try a new style, but it’s always good to test your self-confidence. I mean, I never knew having a disability was a “look,” but apparently I’ve been rockin’ it for 20 years… Try to keep up.

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18 Sweet Examples of Grandparents and Grandkids Taking Care of Each Other

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Grandparents give the best advice, are always available for a hug and know just what to say to make their grandkids feel better. And when your child has special needs, the additional love and support a grandparent provides can make a huge difference.

Last week, we asked our readers on Facebook to share a moment they’ve witnessed between their child and his or her grandparents. Here are some of your responses.

1. “Our son is highly sensitive to having his hands touched and doesn’t generally allow it, but one day during a walk, he gently placed his hand inside my dad’s hand and walked beside him. It was such a tender moment.” — Kate Sytsma

Kate Sytsma

2. “The look on my mother’s face the first time my son called her ‘Grandma’ when he was 5 years old.” — Genelle Thomas

3. “I think some of the most special moments are some of the simplest, like the sweet hugs and cuddles, or how excited my son gets when he sees his grandparents.” — Anne Wilson

4. “My 20-year-old daughter, Lissy, who has nonverbal autism, functions at about a 2-year-old level. Lissy and her grandma are very close. Here she is saying goodbye to Grandma at the nursing home.” — Shelly Boeve

Shelly Boeve

5. “My 12-year-old son has autism, PTSD and anger management problems. His biggest supporters are his grandma and granddad. They watch every test and come to every tournament they can. When Grandma had to have surgery last year for cancer, she took my son’s karate black belt with her and returned it to him only when she left the hospital.” — Kimberley Hauser

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6. “My 10-year-old holds my mom’s hand to help her when they are walking. If she walks too slowly, he pushes her from behind.” — Sara Garcia Carrillo

7. “My parents came to the hospital to see my newborn son, who has Down syndrome and autism. At that point, we weren’t certain if he would live or die. My parents were old and unable to travel, but they needed to see and hold him. It was and is so precious to me. They have since passed away, but my son is now 16 and is doing just fine.” — Loes van Doorn

8. “I have two sons with special needs. The oldest has nonverbal autism and the youngest has a seizure disorder, is nonverbal and has limited mobility. All of their grandparents have loved them since day one.” — Dana Pedersen

Dana Pedersen

9. “My 2-year-old engaged her poppi in a fast-paced game of ‘mimic my gestures.’ She had him in stitches while he struggled to keep up with her.” — Gretchen Morris

Gretchen Morris

10. “My son looked at his great-grandma’s birthday cake and asked her, ‘GG, were you alive when dinosaurs roamed the earth?’ She hugged him and they had a giggle.” — Jessica Carpenter

11. “When her great-grandmother comes to visit, she runs to her with so much joy and love on her face.” — Jennifer Elizabeth

Jennifer Elizabeth

12. “My daughter loves my parents so much. Whenever we go over to their house, she starts saying ‘teteh’ (Arabic for ‘grandma’) as soon as we reach their street! And whenever she picks up a new word, she’ll repeat it over and over again to my parents who applaud her every single time with the same enthusiastic manner.” — Tala Rifai

Tala Rifai

13. “My 5-year-old son has autism and is mostly nonverbal but has started using simple sentences. Yesterday, when his Papa was holding him, he reached over to Nana and, hugging both grandparents, said, ‘One more hug.'” — Lorie McNabney

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14. “My mom and my son have a special relationship. She babysat him for many years, and he loves to hide her keys from her every time she comes to visit.” — Dawn Rewerts Jenks

15. “My daughter, who has Down syndrome and autism, adored her grandpa. He had a connection with her not many have had with my daughter.” — Liz Esterline Roush

Liz Esterline Roush

16. “My 5-year-old son has spastic diplegia cerebral palsy and wears splints (AFOs). My father had both his legs amputated when I was a little girl and he wears prosthetics. They met for the second time last year, and my son was very excited to see that his grandpa also had to wear things on his legs to help him walk.” — Taryn Morritt Botha

17. “My son loves the Titanic. Anything to do with it. His Paw Paw spends hours with him making shipyards and Titanics and watching YouTube videos. They have such a special bond.” — Toni Baldwin Mabry

18. “Here they are last night at dinner.” — Ellen Russo

Ellen Russo

*Some responses have been edited and shortened.

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This Star Is Revolutionizing Disability in Entertainment, and You Can Join Him

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Twenty percent of Americans have a disability, yet people with disabilities make up just 1 percent of characters in film and television, according to GLAAD. Actor and producer Nic Novicki wants to change those figures. As a little person who has broken into entertainment, Novicki defies the odds. But he doesn’t want to be one of a few. So he started The Disability in Film Challenge.

This April, the Second Annual Film Challenge will give people with disabilities a platform to create a short film, increasing their exposure and access to mentors in entertainment. The Challenge encourages anyone to create a short that opens up a dialogue on disability. At the end of our Q&A with Novicki, check out the video for details.

When did you realize you wanted to get into entertainment?

Sixth grade — after a talent show sketch I wrote and starred in. I realized I love performing from that first crowd reaction and continued to act in plays. After going to business school for college at Temple University I started doing stand-up.

What was your big breakthrough?

I would say I’ve had a series of breaks. My first big gig was getting a role on “The Sopranos.” From there I was able to do other TV shows such as “Boardwalk Empire.” However, once I started to do my own projects, I was able to open up doors for myself.

What’s been your biggest challenge?

Finding a way to continue to work in the entertainment industry. It’s an extremely competitive field and hard to make money, especially when you are 3 feet, 10 inches, so as far as acting, I realized early on that I need to do my own projects if I want to continue.

Do you have advice for people pursuing film and television?

Just start working. Help out on as many projects as you can, and continue to do your own projects. Work for free, and do whatever you can to help out on projects. You could start doing projects on a cellphone — a movie shot on an iPhone just won Sundance. The more experience you have as an actor, director, writer or producer, the better you get. The most important thing to keep in mind is that there are no shortcuts. You have to do the work and put yourself in a position to succeed.

What was the highlight of last year’s Disability Film Challenge ?

We had numerous amazing films enter. Most of those filmmakers were first-time filmmakers who put together amazing projects over the course of one weekend. The winner of best actor, Rachel Handler, who is an amputee, got her first agent out of a meeting with casting director Pam Dixon. We also had other filmmakers receive mentoring sessions as awards for winning the challenge. All of the winning films screened at the Chinese Theater during the Hollyshorts Film Festival, and the winners attended a week of panels and films, free of charge, on top of their films premiering in a special screening.  

What’s your hope for the Disability Film challenge this year?

That people continue to make films that include people with disabilities. This year I am hoping that through word of mouth, more people sign up for the challenge. I would like for people with disabilities to make their own films, as well as have student filmmakers and/or filmmakers in general include people with disabilities as actors, writers, directors and producers — and work together on lifelong partnerships.  

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Dear ‘Genetic Disorder Unspecified’…

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Dear “Genetic Disorder Unspecified,”

I don’t know what to say. You see, this is how our relationship is — complicated. Bittersweet. I can’t quite say “thank you,” and “F-you” is a little too harsh now (although it’s admittedly been said many times in the past). It’s like a Dr. Jekyll and Mr. Hyde thing. Since we’ve settled on this placeholder diagnosis — and even before that — you’ve amplified the good and the not-so-good in me. 

I’ve felt absolutely alone and found wonderful friends I would have not found without your presence. You caused a crisis of faith. And an increase in prayer, a connectedness to God, an opened heart for sermons to touch me. I have faith that everyone is beautifully made. I’ve cried countless tears — tears of fear, tears of joy, tears of desperation, tears of pride, tears of exhaustion and tears of amazement. Because of you, I’m more compassionate for others and sometimes have a jealous streak over Facebook posts of milestones met seemingly effortlessly. Because of you, I’m more patient and lose my temper more when I feel overwhelmingly tired. I endlessly research and question if I made the right decision yet know in my bones I’ve done the best I can to help her fight you. You kept her baby-like for longer — I enjoyed the extra snuggles, not having to worry about her opening closed doors and escaping or climbing on everything. But this five-years-and-counting in diapers and without words to express herself sh*t sucks! You’ve taken up a lot of time and energy in my marriage, and because of you, we doubled down on this relationship and have a standing weekly date (My husband does thank you for that!). I’ve been heartbroken and sad when I watch her struggle with things kids half her age do with ease. I’m also over-the-moon ecstatic when she finally does walk or color or drink from an open cup.

I guess what I am saying is — I don’t have to thank you because you’re not my daughter. I don’t have to curse you because you’re not my daughter. I’m grateful for my life — all of it — the good, the bad, the mundane. You are ever-present but don’t get to be the star of the show. I wish we weren’t so complicated. But being a mom is complex and exhausting. The unknown can be difficult and overwhelming. You’re tricky and mysterious. On the Mr. Hyde days, all I see is the bad. Luckily, I’m also more complicated, and I have many days of the sunshine and sweet. So I try not to beat myself up over our relationship.  

My daughter is who she is and is wonderfully made. You’re here; I know that. You impact our life daily; I know that too. My reactions to you and life are my own. So for better or worse, you are a part of our story — but not the cute part or the tenacious part or the best part. She’s got you beat on all those. And as a mom and family, we’re bigger than you too. So I guess I do have a lot to say. We’re complicated.

Sincerely,

Ms. Jeckyll

For all of March, 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.

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If You Don’t Know What the Abilities Expo Is, Here’s Why You Need To

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Over the weekend, Abilities.com hosted its 2015 Abilities Expo in Los Angeles. The event took place at the Los Angeles Convention Center and featured innovative adaptive products, stellar art, local athletic opportunities and workshops for people with disabilities and their families. The Abilities Expo is free to all participants and takes place in different cities across the U.S. Visit its website for dates and more information.

When we attended, many people shared their unique experiences with us.

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Photo by Veronica An/The Mighty

We also met a few service animals.

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Photo by Veronica An/The Mighty

Kelly Stack from Canine Angels explained how dogs are matched with owners who have physical or intellectual disabilities. Each dog lives with a host family and undergoes a two-year training process where they learn more than 40 commands.

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Photo by Veronica An/The Mighty

The dogs then meet their potential forever families for the first time for a two-week intensive course. They finally go home after a graduation celebration in Oregon.

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Photo by Veronica An/The Mighty

These dogs are more than just service animals, they inspire their owners to have confidence and achieve their dreams. Daniele Moore, a woman with autism, told The Mighty that her dog, Chesney, helps her overcome her fear of crowds. With Chesney by her side, Moore has the courage to visit Disneyland and now has a season pass to the theme park.

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Photo by Veronica An/The Mighty

Dogs aren’t the only animals that provide service and companionship. Horses from Dreamcatcher L.A. bring joy to people with disabilities and encourage independence.

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Photo by Veronica An/The Mighty

Riding and interacting with horses helps people gain spatial relationships and stimulates the same muscles as walking.

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Photo by Veronica An/The Mighty

The Abilities Expo also featured adaptive bicycles, custom-designed by Freedom Concepts. These bicycles, tricycles and tandem bikes allow users to ride alone or with assistance.

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Photo by Veronica An/The Mighty

They also allow parents to share a bike ride with their child, no matter what their ability.

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Photo by Veronica An/The Mighty

With these bikes, Philip Jones, 24, experienced the thrill of riding a bicycle for the first time since he was 5 years old.

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Photo by Veronica An/The Mighty

The Abilities Expo also included adaptive sport demonstrations, like tennis, dance and skateboarding.

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Photo by Veronica An/The Mighty
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Photo by Veronica An/The Mighty

Overall, what the Abilities Expo showed us was the strength of the human spirit and the power of resilience. We met folks determined to help others with disabilities be recognized in society as people — not as “less than.”

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Veronica An/The Mighty
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Veronica An/The Mighty

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We were Mighty proud to have been a part of it and can’t wait for the next one.

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Veronica An/The Mighty

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