This Mom’s Response to Autism Being 5 Times More Likely for Boys Than Girls

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Dawn and Trinity Douglas. Via Memories Manifested Photography.

When Dawn Douglas found out her daughter Trinity has autism, she knew the 2-year-old wasn’t alone. Autism now affects approximately one in 68 children, according to the National Autism Association. Of the challenges autism can present, forming relationships proved difficult for Trinity.

“The things I take for granted, like easily making friends, she fights hard for,” Douglas told The Mighty in an email. Douglas knew of many support groups for children with autism, but none of them had many girls in them. Boys are fives times more likely than girls to have autism, according to the Center for Disease Control and Prevention.

Agonizing over Trinity’s social future, Douglas decided to start My Circle of Girls (MyCoG), a group to foster friendships for girls with autism. Started in March 2014, MyCoG holds monthly programs in Raleigh, Durham and Chapel HillNorth Carolina.

leah-and-erin
Via Memories Manifested Photography.

One event in particular stands out to Douglas. Last summer, MyCoG had a two-part swimming lesson for the group members. A scary reality of autism is the risk of drowning, which is among the leading causes of death for people with autism, according to the National Autism Association. Douglas knew two lessons wouldn’t ensure every girl could swim, but she and other parents were comforted knowing the girls were introduced to life-saving skills.  “That was when I realized that MyCoG is not only a social and service group, [but also] it is a more holistic approach to addressing the needs of girls living with autism,” Douglas told The Mighty.

While Douglas has always had a strong relationship with Trinity, who’s now 6, she acknowledges that MyCoG has given them even more time together and even changed her mindset as a parent.

“MyCoG has really changed my life,” Douglas said. “It has given me new perspective on parenting a child with autism. It has offered Trinity new friends, invitations to gatherings and a diverse network of support for our family.”

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The girls learned about dentist visits during a recent event. Via Memories Manifested Photography.

At first, MyCoG held events for girls ages 2 to 6, but in August 2014 it expanded to include girls ages 2 to 11. In the future, Douglas hopes they can include girls up to 18 years old, and she wants to expand throughout the state and country.

“MyCoG has opened new doors in the autism community as well as [for] girl empowerment,” Douglas said.

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Parent NaShonda with her children. Via Memories Manifested Photography.
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5 Things to Know When You Approach Someone With a Visual Impairment

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More often than not, I get stares and comments as a person with a severe visual impairment. Whether my face is planted a few inches from a computer monitor or I’m nose to nose on a smart phone, my behavior tends to send wandering eyes into a tizzy.

I often find stares to have a predatory-like feeling. It’s as if I’m lunch for someone’s alligator, and the alligator in question is known as curiosity.

Mandy Ree The Mighty
Mandy standing next to a statue of an alligator

Curiosity can be a good thing if handled right. If I’m offered help or someone says “take your time,” I will gladly be more open about my needs.

But when it comes to question upon question or uneducated comments regarding my intelligence and my ability to read, that’s when I feel trapped in the jaws of the gator and I tend to shut down.

I’ve been trying to be more open to explaining my disability to others, but too often, it becomes a hassle, a round of 20 questions that never ends past question 20.

I only have so much patience to deal with such situations. If I’m not asked about my disability in the right way, I simply don’t answer due to too much heartache. So here are some tips for approaching me or anyone with a visual impairment:

1. Don’t state the obvious.

Questions like, “Are you blind?” irk me to no end. No, my nose is pressed against my phone to help me get good reception!

2. Don’t question my intelligence.

My eyes might not work correctly, and it affects my ability to read small print or cursive writing. But it doesn’t mean I don’t understand the context of what is written; I just can’t see it. Plain and simple. Make the font size bigger, print instead of write and offer to help read to me, which brings up my next point:

3. Help me!

Some things are just not in my control when it comes to printed documents that are handed to me. If I’m struggling and ask for help, please kindly offer it. Don’t belittle me because I’m having a hard time. I’m sorry I’m such an inconvenience. But sometimes, things like this are an inconvenience to me. Be helpful and patient.

4. Go easy on the questions.

I’m the kind of person who doesn’t appreciate having to answer so many questions about what I deal with. I’m a “Cliff Notes” kind of girl and prefer to answer only the basic facts about my condition. Unless I know you on a personal level, I’d rather keep the conversation people-focused and leave the disability as a second thought. Now, in this case, your results may vary depending on the personality of the person. I’m more of an introvert and need to get to know you better before I answer any questions in detail. Now if you’re a child, I might tweak that train of thought a bit. Children are curious and that’s a good learning opportunity for them.

Mandy taking a selfie in front of balloons

5. Introduce yourself to me, even if I already know you.

Face recognition is not one of my many traits. If you are staring at me because you might know me or get mad because I don’t acknowledge you, don’t take it personally. I just can’t see who you are. Even when you wear a name tag, it still doesn’t help. Treat me like a new friend every time until I can pinpoint who you are by voice or repetition.

Again, and I can’t stress this enough, a visual impairment affects my eyes only, not my intelligence.

And although I may not see you doing it, I know you’re there. It’s like a sixth sense. Come up and say hi. Treat me like a person first. Ask questions if needed but don’t make it a big deal. Focus on what I can do and worry about the rest later.

Follow this journey on Legally Blind Bagged.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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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Taylor Swift Personally Invited This 7-Year-Old Pianist With Autism to Her Show

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Jacob Velazquez is one of Taylor Swift’s biggest fans. The 7-year-old listens to her albums every day and loves watching her videos on YouTube, his mom, Tina Velazquez, wrote on Autism Speaks.

Jacob, who was diagnosed with autism at age 4, is also a jaw-droppingly good pianist. In the hopes of getting Swift’s attention, he created a medley of Swift’s songs, which he plays by heart in the incredible video below:

When Autism Speaks tweeted the video on August 19, something wonderful happened. Swift saw the video and invited Jacob to one of her upcoming shows:

The invitation comes just in time for Jacob’s birthday, which is on September 29.  Way to go, Jacob!

Lead photo from Jacob Velazquez’s Facebook page.

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When People Ask What’s ‘Wrong’ With My Daughter With Autism

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My daughter, Caroline, is joyful, jovial, sweet and so smart. She’s also a nonverbal sensory seeker who flaps her arms and screams uncontrollably when she becomes excited or frustrated. Caroline has autism; she is not deaf and she is not without feelings.

I am Caroline’s mother, caretaker and biggest advocate. I am not deaf and I am not without feelings.

On more than one occasion a seemingly typical but curious adult has asked — within hearing distance of Caroline — “What is wrong with her?” My visceral response: “Nothing is wrong with her, but I question your upbringing and manners. And to be clear, when I say nothing is wrong with Caroline, I meant there was nothing wrong with her before she heard a total stranger ask: ‘What is wrong with her?’”

Caroline communicates using sign language, a communication device, a few words and gestures. She doesn’t really communicate her feelings other than to share that she’s mad when access to a preferred item or activity is denied. So I don’t know exactly how Caroline feels when she hears someone ask a question such as “What is wrong with her?” but I do know she hears it and understands what it means. And for that reason alone, I become enraged that a total stranger would feel it appropriate to express their curiosity in such an inappropriate manner. When inquiring about Caroline’s differences in such a thoughtless matter, that person is putting their idle curiosity before Caroline’s feelings and mine.

I would much rather someone ask about Caroline’s behaviors than simply stare at her, but the questions need to be worded in a way that’s not hurtful. For instance, instead of “What’s wrong with her?” ask “Why does she flap like that?” Or when Caroline is jumping up and down, screaming and flapping, I’ve had other moms ask with concern if those are happy screams. To which I generally respond with a smile and, “Yes, those are very happy screams. Caroline has autism and she absolutely loves the pool. What are you are seeing right now is Caroline expressing pure joy. Thank you for asking.”

It’s normal to be curious. But when one assumes that something is wrong with another because they act differently, it’s thoughtless. Caroline would not be the person she is, the person I love, if she did not have autism. When I look at Caroline, I don’t see a bunch of “strange” behaviors related to autism — I see my wonderful, hard-working daughter who overcomes countless challenges every day. So, no, there is nothing “wrong with her”; she is simply amazing.

She’s different, not less.

Follow this journey on Failure to Thrive or Ability to Overcome?

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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See the Amazing Photos Taken by a Legally Blind Photographer

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Tammy Ruggles
Via Tammy Ruggles.

Tammy Ruggles knew she had trouble with her vision from an early age. She got her first pair of glasses when she was just 2 years old. She remembers holding books close to her face and sitting near the front of the classroom to read the chalkboard. But it wasn’t until she turned 40 that Ruggles learned she has retinitis pigmentosa (RP), a rare progressive disease that affects the retinas, eventually leading to blindness.

Ruggles, 54, is now legally blind, and she’s pursuing her passion for art in a completely new way. Ruggles grew up loving art but stuck mostly to sketching. But in 2013, she started her professional photography business, taking pictures and editing photos with the help of today’s technology.

With a point-and-shoot digital camera set on auto, a 47-inch computer monitor and her remaining vision, Ruggles photographs landscapes, flowers and abstract objects. She doesn’t usually photograph people, as it’s difficult for her to tell if the subject is looking at the camera or what type of facial expression someone is making.

Her process is a little different than most photographers’. Ruggles, from a small town in Kentucky, shoots a bunch of photos, but she’s cannot really view them until she uploads them to her computer.

Lights Over the Land
Via Tammy Ruggles.

“When people look at my photography, I want them to say she’s an artist first,” Ruggles told The Mighty. “I want them to see the art before the visual impairment. I want them to look past my disability.”

On Aug. 28, Ruggles’ photographs will be in an exhibit for the first time. Art Beyond Boundaries, an organization that promotes artists with disabilities, is holding the gallery called “My Mind is a Camera” in Cincinnati, Ohio.

You can view Ruggles’ digital photography portfolio here and see some of her photos below.

Botanical 5
Via Tammy Ruggles.
Clouds 2
Via Tammy Ruggles.
Grazing
Via Tammy Ruggles.
Polaroid
Via Tammy Ruggles.
Botanical 4
Via Tammy Ruggles.
Fence Line
Via Tammy Ruggles.
As a Cloud
Via Tammy Ruggles.
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10 Small Victories in My Life With Cerebral Palsy

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Ah, victory — that wonderful feeling of winning a race, getting a promotion or finding the man (or woman) of your dreams. There’s nothing quite like the sense of accomplishment that comes from succeeding at big things. That sense of accomplishments can come from small things, too, especially for me. Living with cerebral palsy has caused me to think about a lot of everyday things as victories, and I wanted to share some of them with you. Here are my top 10 “small victories.”

1. Getting my feet under the blankets on the first try.

The way my body moves makes getting settled in bed at night more difficult than it should be, especially when it comes to blankets. My arms have a natural reflex to pull the blanket up instead of over my body. Usually this results in the blanket covering everything but my feet and a struggle to get it back where it should be. I love the nights when I manage to get the blanket set up just right and it slides over my feet with ease.

2. Plugging in my chair in the dark.

I use an electric wheelchair. Since I drive it around all day, I have to charge it in my bedroom at night. My light switch is across the room from my bed, which means I have to turn off the light, transfer to the edge of my bed and then plug in my chair. Finding the charging hole on the joystick is easy; putting the cord in the right way is not. It’s a lot like trying to plug in your phone when it’s dark, but worse. I often end up resorting to “let’s just put the end of the cord into the charging hole and twist the cord around until it slides in.” This can sometimes take a while, so I’m quite grateful when it happens quickly.

3. Turning 20-minute bathroom breaks into 10-minute bathroom breaks.

I don’t need to do this often. It happens most when I need to meet friends or squeeze in a bathroom break before an assembly or choir performance. It always feels good to know I can run to the bathroom and make it back before anything important happens.

4. Having a substitute aide I liked.

I’ve graduated now, but this was a huge thing when I was in school. I was never happy to hear that the aide who worked with me every day had to call in sick. I’d developed a nice routine with her and the routine was never quite the same with a sub. I also found it awkward “training” them, explaining what I did and did not need them to do. It was significantly less awkward when there was a substitute who had a similar personality and interests as me. Conversations flowed much easier when we actually had something to talk about.

5. Reading out loud and sounding good.

While I don’t have a speech impediment, talking out loud for long periods of time is hard for me. My tone kicks in and I often end up talking too fast or running out of air. For this reason I feel a real sense of pride when I read a presentation or passage from a book out loud more or less flawlessly.

6. Landing a transfer when I realize too late that I’ve positioned for it wrong.

I do this more often than I’d like to admit. I’ll be transferring from my chair to another surface and think I’ve positioned my chair close enough to said surface, then realize during the transfer that I didn’t. I transfer like a paraplegic. It’s a lot of sliding from one surface to another. If I make the mistake of positioning my chair too far away, I don’t always land on whatever I’m trying to transfer to. When I do manage to land it, I consider myself lucky.

7. Finding clothes that are both cute and comfy.

I’m very much a girly-girl. I love being cute and stylish. Comfort is also a huge priority since I’m sitting a majority of the time. Shopping, especially for pants, was a nightmare while skinny jeans were in style. Skinny jeans just don’t work for me. Not only do they usually dig into my stomach, but the bottoms don’t fit over my leg braces. It wasn’t my favorite style trend. You can imagine my happiness when comfy, stretchy, funky-patterned leggings came into style. I live in them now.

8. Going out and not having a single accessibility snag.

Going out — especially when it’s somewhere I’ve never been before — can be stressful. My brain plans for every single problem: stairs, inaccessible bathrooms and staff members who aren’t comfortable with disabilities. I have backup plans for everything, but I absolutely love it when I don’t have to use them.

9. Making food and not dropping it in the process.

This applies to anything from cereal to sandwiches. If I manage to make food for myself and don’t drop it, it’s a good day.

10. Recognizing little victories.

The fact that I can even make this list is a little victory in itself. I love that even on bad days, I’m able to feel good about one of these things.

A version of this post originally appeared on CPExperience.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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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