Why I Lived Openly With Autism While Hiding My Schizophrenia

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Most people I knew when I was young expected me to die or spend the rest of life in institutions. I have a diagnosis of atypical schizophrenia and Aspergers syndrome, and had a very troubled early life which involved abuse, drug issues, bullying and self-destructive behavior.

But when I was 26 I decided to change my life. I started on a path which took me through Bachelor’s and Master’s degrees in visual art, publishing an autobiography and eventually landing an amazing job in the Australian public service.

As soon as I joined the public service my life changed completely. I moved in different social circles, bade farewell to my public housing estate neighbors and left a lot of the heavy load of life behind me. I learned about good food and “nice things.” However, there was a negative consequence in the mix, too. I could talk about my Aspergers diagnosis because I had written a book about it, but in my mind schizophrenia was another matter entirely.

I struggled to accept the schizophrenia label for a number of reasons. Firstly, the diagnosis came with an immense amount of negative stereotypes. People with schizophrenia were murderers and homeless people, according to the media. There was an autism self-advocacy movement, but I couldn’t find a corresponding one for schizophrenia. People with autism had a long list of positive role models, such as autism and animal rights advocate Professor Temple Grandin and amazing musician Ladyhawke, but the list was considerably shorter for schizophrenia. Even people who could be seen as role models, like mathematics genius John Nash (who inspired the movie “A Beautiful Mind), were very rarely described as having schizophrenia. Their diagnosis always seemed to be shrouded in mystery with just a little hint of shame. People with schizophrenia werent successful in the popular imagination.

It was almost impossible to feel proud of my mental health diagnosis with all of this weighing down on me. So I decided to hide that particular diagnostic label away, consigning it to a box in the garage and hoping I would never have contact with it ever again. I even stopped seeing my psychiatrist and instead got my medication from my general practitioner. Over time, I forgot I even had an illness. It was part of a distant and horrible life which I had no intention to revisit. But unfortunately, my schizophrenia didn’t forget me. Three years after I joined the ranks of the professional classes, I became incredibly unwell with psychosis.

I had not told anyone in my new world of my illness. I worried people would think I was dangerous or unreliable. But when I started to get unwell I had very little insight and believed all the delusional thoughts and hallucinations were real. Eventually — after many months of confusion and terror — I ended up in hospital. I felt scared to tell my manager about my diagnosis, but I had to in order to get time off of work.

My manager at the time was married to a staffer for a conservative politician. She always looked immaculate and I thought she would react badly to my predicament. But the opposite was true. She was beautiful about it from the very start. She was one of those amazing managers who care deeply for their staff members and all she had in mind was my welfare. I remember when she visited me I was completely addled and terrified I would behave inappropriately. She sat there quietly, telling me stories of people with similar circumstances she knew to put my mind at ease.

Over the next year or so, my manager became my strongest ally. One time I dragged myself into work only to realize that I couldnt stand to be there. I was terrified and didnt know what to do. I went straight to her office and told her how I was feeling. She dropped everything and drove me to my mental health clinic. I worried she would miss a meeting, but it was evident my welfare was much more important to her than any meeting.

With her care and kindness, my manager helped me overcome the episode of illness. If I hadnt opened up to her, I probably would have lost my job. While I thought I would somehow ruin my workplace with the taint of schizophrenia, the opposite was true. Now I’m able to tell my managers and colleagues about both my diagnoses and feel accepted. 

Follow this journey on Jeanette’s website.

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Supermodel Karlie Kloss Gave These Make-A-Wish Teens a Model Makeover

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This is a dream come true for two young women.

Former Victoria’s Secret model Karlie Kloss recently gave a complete model makeover to two young women from the Make-A-Wish foundation, an organization that grants wishes to children with life-threatening medical conditions.

Kloss took them through wardrobe and makeup, documenting their glamorous transformation in a video posted to her YouTube channel, Klossy. The teens, Shannon and Maddii, took some stunning photos with the well-known supermodel, even donning the famous Victoria’s Secret angel wings for some photos.

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Via Instagram user Shanniegirl3

The girls chose very different looks, as Kloss points out in the video below. Maddii went for the blonde bombshell look…

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While Shannon went for a more edgy style.

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Both girls looked incredible.

Check out the video below for full coverage of their day with Kloss: 

 

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When a Cashier Went Out of His Way to Help My Child’s Sensory Overload

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To the cashier named Aviv at Tesco Woolwich,

My family and I were having a busy shopping trip. My son who’s autistic was having a difficult time because your store didn’t have the right snacks he wanted. The wrapping was different and he finds change hard.

We had reached the checkout, which you happened to be at, and he experienced a shutdown that was triggered by sensory overload. All the sounds — the freezers buzzing away nearby with the 50 hertz hum, the bright strip lighting flashing 60 times per second, a baby crying, people talking — as well as bright packaging and smells from the bakery caused him to sink to the floor and cover his face with his hands. He does this to help ground and regulate himself; the ground is solid and cool, and when everything else rushing toward you seems too much, it’s all we as autistics can do.

People often believe that children they see lying on the floor silently are having some sort of tantrum and mutter that they should be made to get up.

But you didn’t. You came from behind your register and gave my son your chair while speaking in a low tone. You didn’t judge, and when I said, “Thank you,” you replied you would do the same for anyone who needed help. That it’s just the normal thing to do.

But you see, it’s actually not. Many times we are judged, and I wanted to say thank you for being so helpful. It’s great when someone goes out of their way to help a child with a neurological difference.

After we got home, I spoke to my son and asked if he was all right and how he felt about what happened. He said he didn’t want to get up off the floor, but he felt better once he was on the chair, that the chair spun and that made him feel better.

He said the man was kind and that people usually say he’s spoiled.

One man’s kindness in a moment of my son’s distress made what would have been a difficult experience for him much easier and more comfortable.

When the chair was wheeled around to us, I was seated on the floor, rubbing my son’s back while his little sister sat with him. The chair gave him the means to spin, which balanced his vestibular sense and gave him much-needed sensory input.

That and the donut he ate as he sat there!

If your child sinks to the floor while you are out shopping or on a busy trip, don’t immediately presume disobedience or stubbornness. They could be having a sensory overload that has caused them to shut down. Wait and be patient, because forcing them to get up will cause them to strike out, as it would anyone who’s feeling lightheaded and is being forced to move.

Give them time to balance their senses, and if you’re very lucky, a man may give them a spinning chair.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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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5 Things I Wish I Knew When I Was Diagnosed With Crohn’s Disease

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I was diagnosed when I was 22 years old. I was bombarded with information from doctors, the Internet and even advice from people I barely knew. It was a scary and depressing time for me. I was in a new relationship, I had gone through months of testing to finally get my diagnosis and then had to come to terms with knowing there was no cure. There was no “pill” I could take to get me back to feeling well again. Even though each individual experience can vary greatly with Crohn’s disease or inflammatory bowel disease (IBD) in general, there are a few things I wish I knew or at least heard when I was diagnosed.

1. You are not alone.

Reach out to other people with IBD. There are plenty of forums that can connect you to people around the world who understand what you’re going through. This may take time as you adjust to everything that is going on, but I have found a support network is the best tool I have in dealing with my disease.

2. Don’t be afraid to say no.

There will be times you are too sick or tired to deal with people, events and sometimes life in general. Take a time out and relax and don’t feel bad for turning down plans.

3. Stay informed.

Go into your doctors’ appointments with questions and write down answers. Keep in the loop about drugs and research. It’s your body, and you need to stay informed with what’s going on so you can make educated decisions with the aid of your family and medical professionals.

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4. Keep setting goals.

I thought my life was over when I was diagnosed and believed I would never accomplish any of the goals I set before my diagnosis. There are periods of flare-ups and remission. Reaching your goals is still possible — don’t give up!

5. Communication and planning is key.

When you’re not feeling well, trips out can still happen with some planning (usually around bathrooms) and letting the people you’re with know you’re not 100 percent. It may take time to let people close to you know about your disease, but I have found a great group of friends who have stuck by me in sickness and health! There are times I have ditched out on plans or left events early, but they have always been supportive.

Follow this journey on Crohnie on the Go.

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Watch Kelly Clarkson’s Response to a Request From a Fan With Down Syndrome

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Kelly Clarkson keeps giving the world more reasons to love her.

After her concert on August 25 in Phoenix, Arizona, Clarkson had a meet-and-greet with Angelica Elias, a 19-year-old fan with Down syndrome, E! Online reported. After Elias said hello and gave the singer a hug, she asked Clarkson if the two could sing “Silent Night” together, Elias’s favorite song. Clarkson happily obliged.

On August 26, Carolina Elias Joos, Elias’s sister who attended the concert with her, posted a video of the touching duet on Facebook:

Angelica asked Kelly Clarkson if they could sing ‘Silent Night’ together. If you know Angelica, you know it’s her favorite song. Watch their duet here… #KellyClarkson

Posted by Carolina Elias Joos on Wednesday, August 26, 2015

 

I’m totally going to cry,” Clarkson says mid-song in the video above.

Joos said Elias was ecstatic after the encounter.

“After the duet, Angelica couldn’t believe it happened,” Joos told The Mighty. “She’d told me before that she wanted to ask Kelly to sing ‘Silent Night,’ and I told her she probably wouldn’t do it because it’s August. They both sure proved me wrong!”

Kelly Clarkson
Photo courtesy of Carolina Elias Joos
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How This Father-Son Duo’s Cross-Country Run Is Helping Kids With Disabilities

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A father and his son with cerebral palsy who pledged to run across the country to support kids with disabilities are rapidly approaching their big finish.

Shaun and Shamus Evan’s journey really began in November 2013, when the two won a 45-mile ultramarathon together, the Evans family, who live in Galway, New York, wrote on their Facebook page. This would be an impressive feat for anyone, but this accomplishment was extra special — Evans’ son Shamus, then 7, has limited mobility due to cerebral palsy. Evans pushed him in a wheelchair, dubbed the “running chariot,” for the duration of the race.

Quickly after the race, Shamus began asking his father when they could complete a cross-country run, and nearly two years later, his dream is becoming a reality. On July 4, 2015, the Evans family embarked on a 65-day, 3,200-mile run across the United States, The Mighty reported in July.

As of Tuesday, August 25, Evans and Shamus, now 9, had covered about 2,970 miles with Evans pushing Shamus in his wheelchair nearly the entire time, Runner’s World reported. They’d made it all the way from Seattle to Bellefonte, Pennsylvania, averaging more than 50 miles a day for 53 days straight, according to the outlet.

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Evans and Shamus on the road. Photo via the Ainsley’s Angels Power 2 Push Facebook page.

As if completing an ultramarathon a day for approximately two months wasn’t enough, the Evans family turned their journey into an incredible mission. As of August 27, Evans and Shamus have raised just over $100,000 to support Ainsley’s Angels of America, a group that works to include children with special needs in endurance events. They’re also donating racing wheelchairs like Shamus’s running chariot to children with disabilities around the country.

On August 25, Evans donated the 20th wheelchair of the trip to 8-year-old Dominic Sauter in Bellefonte, Pennsylvania (video below). Dominic hadn’t been on a hike in three years because he’d grown too heavy for his dad to carry him, Runner’s world reported.

Early next week on September 1, the father-son duo will cross into New York City, where their incredible trip will come to an end. But the difference they’ve made for families around the country — and their lifetime of advocacy — will continue on.

“It’s all about promoting inclusion, and giving that gift of mobility,” Evans says in the video below.

Take a look at some photos from throughout their journey below:

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Shamus leads the way on foot as the team crosses the halfway point in their journey. Photo via the power2push Instagram page.
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Evans (back) and Shamus (center) present two running chariots to children in Ohio. Photo via the power2push Instagram page.
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The Evans family on August 26, day 54 of their cross-country run. Photo via the Ainsley’s Angels Power to Push Facebook page.
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Evans greets a supporter on the road. Photo via the Ainsley’s Angels Power 2 Push Facebook page.
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Photo via the Ainsley’s Angels Power 2 Push Facebook page.
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Photo via the Ainsley’s Angels Power 2 Push Facebook page.

Learn more about the Evans’ cross-country run in the video below, and watch Evans present the 20th wheelchair of the trip Dominic Sauter at 1:28.

To keep up with Shamus and Shaun Evans as they finish their journey, check out their Facebook, Twitter and Instagram pages. To support their team and Ainsley’s Angels of America fundraiser, head here.

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