When I Learned My Son With Autism Is in the Bottom 1% of His Peers

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So much has changed in such a short time for my son, Timothy. I’m having a hard time catching my breath.

Last week was hard. I learned Timothy is being discharged from IBI (intensive behavioral intervention) therapy which has been his second home for almost 18 months. But that’s not the hard part.

The hard part was reading he was in the bottom one percent of 100 of his peers. Oh how that hurt my heart.

A general blanket of numbness came over me as it sunk in. Yes this is real. It’s not going away any time soon. And even as I felt it wash over me, I was calm. I knew these things already. I was not surprised.

These are some other things I know about my son.

1. I know my son and I know his struggles are real and not buzz words.

2. I know that when he tries to print his name, today he can’t, and that’s OK.

3. I know that when he tries to make it to the toilet, sometimes he can’t, and that’s OK.

4. I know that when he tries to fit in he won’t today, and that’s OK.

5. I know that when he tries to eat “other” foods, today he can’t, and that’s OK.

6. I know that when he tries to tie his shoes, today he can’t, and that’s OK.

7. I know that when he tries to do everyday kid things, today he can’t, and that’s OK.

8. I know that when he rides the bus (aye, it ’tis the short one, folks) he wears a harness to keep him safe, today, and that’s OK.

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9. I know that at 7 years old he wears diapers still, today, and that’s OK.

10. I know he feels happiness today and that’s OK.

11. I know he feels loved today and that’s OK.

12. I know he tries today and that’s OK.

Maybe tomorrow he can do something he can’t today. Maybe not. I am OK with that, either way. We live for today and what he can do. This is what Timothy’s autism looks like. How about yours?

A version of this post originally appeared on The Book of Timothy

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The Word That Made My Son With Bipolar Disorder Suddenly Change the Channel

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When my son quickly changed the channel the other evening, my heart sank.

Our TV is tuned to the Disney channel all the time. I love how they keep with the times but still have wholesome programming. We were watching “Dog with a Blog” and the son in the show, Tyler, called someone “crazy.”

I know, people say that all the time, but here I am, with an autistic son, who also has bipolar disorder. He is currently in a severe depressive cycle and very sensitive. To hear this term used as a joke really bothered him. I used this to get him to open up to me.

“Why did you change it?” I asked. “Because Tyler said ‘crazy.’ I don’t like that, Momma. Do people think that I’m crazy?”

So now you see why it upset us. When I was growing up, kids called everything “gay.” If something was stupid or you didn’t like it, it was “gay.” As a teen, I saw no harm in this. The thought never crossed my mind that it could hurt someone. Until someone in my family, whom happens to be homosexual, expressed hurt in how I threw that term around. I never used it again.

I reach out and divulge details of our journey because we want to help change the world. We want parents and other children to know that they aren’t alone in their struggles. We also want to educate our youth that some words should not be used an adjective.

It may not hurt you to hear it, but I promise you it’s hurting someone else.

This goes beyond just “crazy” and “gay.” Words like “retarded,” “short bus,” “insane,” “cray cray,” these words hurt!

If you’re a tall, skinny person you wouldn’t want someone referring to you as “that tall, skinny kid.” You would want to be referred to by your name, or something positive about you. Same goes for someone with a mental illness. They don’t want to be called “crazy,” or “cray cray.” Nor do they want to hear you calling others that.

“Sticks and stones will break my bones, but words will never hurt me,” is Bull! Words hurt, sometimes more than a punch to the gut.

We are only as good as the examples we set for our children. So as a mother, I beg you to think about the words you are using as an adjective. You set the example for your children. If they hear you say them, chances are they are repeating them.

The Mighty is asking the following: What was the moment that made you realize it was time to face your mental illness? What was your next step? 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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15 People Who Have Had Cancer Share What Helped Them Most as Patients

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If you or a loved one has ever received a cancer diagnosis, you might understand how important supportive friends and family can be. Sometimes, it’s the smaller, day-to-day things that mean the most. Picking the kids up from school, offering a hand to squeeze on a treatment day or just being there to share a laugh can make such a difference for someone who is living with the disease.

Fuck Cancer, an organization that focuses on prevention, early detection and support for people affected by cancer, asked its readers who have lived or are currently living with cancer to share the best thing someone has done to help them. We wanted to share some of their responses.

Here’s what they had to say.

1. “My nurses were great listeners. They were compassionate, and I felt like they genuinely cared about me.” — Emily Smurthwaite Freund

2. “Without me asking or saying anything, my neighbor would stop and get my kids to walk to the bus stop. Pancreatic cancer and chemotherapy were hard enough. She made my day a little easier.” — Lisa Bitzel Clevenger 

3. People just being kind and friendly have made difficult times more bearable. A smile goes a long way. — Hetti Spagoh

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4. “The best nurse I had told me about how hard the fatigue was going to be… and she was spot on; it was brutal.” — Lucas Damm

5. “All my Facebook friends inspired me to fight and live strong. My parents wouldn’t let me give up. My doctors supported me.” — Jodi Lameo

6. “Expressions of sympathy have turned out to be more comforting to me than words of encouragement because sometimes you don’t know if you can believe the positive stuff. When someone expresses sympathy, they’re acknowledging how sh*tty it is, and that makes me feel like they’re really thinking of me and how I must feel.” — Rosaleen D’Angelo

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7. “When I was first in the hospital and had just been diagnosed, my nurse sat up with me one night when I was terrified. She held my hand, and we just talked. She nodded and listened and validated my fears, and gave me honest answers and strength with her calm, gentle words.” — Sara Thompson

8. “A doctor telling me I’m an inspiration.” — Troy Waters

9. “Being treated like a normal human being. We aren’t fragile or brittle. We just want people to treat us like everyone else.” — Stephanie Carine Muir

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 10. “When I had cancer, my kids were the most supportive. When I lost my hair, they colored on my head. When the hair started growing back they all put little barrettes in my hair. It made me laugh so hard.” — Sandra Lee Elliott

11. “My dad stayed two weeks in the hospital with me day-and-night so I wasn’t alone and scared, and he drives me to all my appointments. Breast cancer sucks, but when you have family and friends for support, it makes it bearable.” — Alisha Ann Pelt

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12. “My best friends brought me food and took me grocery shopping. Also, my friends treated me as a person and not a person with cancer.” — Krystyna Pentlicki-Maloney

13. “My daughters, who were only 15, 12 and 8 when this started, refused to leave me. Even though it was ugly and I didn’t want them to see it all, they refused to hear that Dad’s or Grandma’s house would be better. They said they would soak in every last minute until I was gone or until I got better. (I’m getting better).” — Jennifer Silver

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14. “Doctors coming to me before my surgery and explaining all the ins and outs of the operation to make sure I was fully informed.” — Sean Walsh

15. “After my second surgery, a friend used his hotel points so I could stay in a hotel to recuperate for a few days (since my daughter had just turned two and didn’t understand the concept of Mommy needing to recover). Another friend stocked the room with delicious food I could eat, gossip magazines and two beautiful scarves. She also went to the pharmacy to pick up my medicine. Other friends sent chocolate and a nightgown. Yet another sent a check with explicit orders to spend it on myself. I got a pedicure and a pretty dress and felt pretty for the first time in months. The list goes on and on! A gift from the heart does wonders.” — Vanessa Runnalls

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*Some responses have been shortened and edited.

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The Problem I Have With Alzheimer’s Disease Headlines Like These

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The headline on the article reads:

“New Alzheimer’s treatment fully restores memory function.”

What great news! Headlines like that have been circulating around the Internet, forwarded from friend to friend for several years now. They refer to tests being conducted in many different labs around the world. As my husband died of Alzheimer’s disease, everyone I know is quick to send them on to me.

Unfortunately these headlines are misleading.

When one reads the stories that follow, it turns out the patients involved in these many trials were mice.

Alas, my husband was not a mouse. And neither are the millions of men and women around the world who, along with their caregivers, live with the death sentence: Alzheimer’s.

It’s a long way from a mouse to human being. At a European workshop held in London in May 2010, the conclusion of a study of the efficacy of mice was that although mice are among the best models for cures in humans:

“Mice are not always reliable as preclinical models for human disease and the scientific literature is littered with examples of drugs that worked well in animals but turned out to be ineffective in clinical trials on humans. These failures cost the pharmaceutical industry millions of euros.”

Even if the mouse/human model was a perfect match, it would take years and a lot of money before the drug in question became available to human patients. Getting a drug to market is a long process. In some unusual cases, the preclinical process can be completed in two years, but the average is five to seven, at a cost of millions. At the end of that trial period, the FDA or its counterpart in other governments, must give approval for clinical trials which take another five to seven years. On average, it takes 12 years to get a drug to the patient. One out of 10,999 might make it, at a cost of approximately 1.8 billion dollars.

Oh to be a mouse!

Or for that matter, oh to exchange Alzheimer’s for some other disease!

Comparing diseases is an uncomfortable subject. Whichever one we or someone we love has (even the common cold) is the worst at the time. But some diseases do offer more hope than others. The Alzheimer’s Association reminds us that of the top 10 causes of death in America, Alzheimer’s is the only one that cannot be prevented, cured or slowed.

Approximately five times more people die of Alzheimer’s than HIV/AIDS. Yet HIV/AIDS receives 23 times more than Alzheimer’s of the research budget of the National Institute of Health. In the United States, cancer research gets $5.4 billion; HIV/AIDS, $3 billion; heart disease, $1.2 billion; Alzhiemer’s research $566 million. Please note the difference between the billions and the millions — huge.

So, headlines about cures are deceiving. There is no treatment that will alter the course of Alzheimer’s. There is no cure. Everyone diagnosed with it will die, slowly, dignity first, then the body.

My quarrel with misleading headlines has two aspects. First, they give false hope. And most important, they may discourage fundraising. Read a headline like the one quoted above, and why would you write a check for Alzheimer research? Yet the need for research money is greater now than ever. There’s no shortage of ideas or scientists willing to stake years of their lives trying to find a cure. There’s a shortage of funds to finance their projects.

The idea that there might be a cure that did not get to millions of patients, including someone you love, because we failed to fund the project? That should be society’s nightmare. It’s mine.

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This post originally appeared on Sutton’s Place.

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How to Help Kids Feel It’s OK to Ask Questions About Differences

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When I was little, my parents’ friends had a daughter, Emily, who experienced brain damage during childbirth. As a result, Emily couldn’t sit up or talk.

When we visited them, I remember feeling uncomfortable and even fearful about this girl who was just a little older than I was. I remember having questions I didn’t have the words to ask.

I recently asked my mom whether she explained to me why Emily grunted and lay on the floor. She told me she had not. As my great Aunt Libby once said, “We didn’t talk back then like we do now.”

I think I would’ve felt less fearful of Emily if my parents had better prepared me for these visits. If they’d said, for example:

“Emily can’t move her body or talk the way you can because there was an accident when she was born and she didn’t get enough air to breathe, so her brain got hurt. But Emily can communicate by making noises and using her eyes and she loves to laugh and play games… so you can play with her and try to make her laugh.”

In her book, “White Teacher,” Vivian Paley describes a strategy used by her student-teacher to talk about differences when they came up in the classroom. In reacting to a child who stuttered, this student-teacher did not ignore the problem but instead named and defined it, thereby making it “all right (for other students) to talk to Stuart about his stuttering.”

When a teacher (or parent) models this type of behavior, s/he is also creating norms that make it “all right” to talk about one’s differences and to question one’s peers about their differences.

Recently, my daughter commented on a boy who happens to have some learning delays, saying, “He hits because he’s a baby.”

“He’s not a baby,” I clarified. “He’s the same age as you are. All of us are working on learning how to do something better and Matthew is working on learning how to touch people gently.”

We went on to talk about how she could support her friend as he continues to work on gentle touching: “Matthew, I don’t like hitting, but you can be gentle like this.” (I took her hand to show her.) Or how she could kindly tell him, “I don’t like that, please stop.” We also talked about what my daughter was working on learning at that moment.

Without a conversation that allows young people to ask questions and satisfy their natural curiosity, adults can’t tap into a young person’s compassion, nor can we prepare young people to ask respectful questions about differences (physical, racial or otherwise). If we can’t do this, we certainly won’t be able to prepare young people to take action for equity.

A version of this post originally appeared on Raising Race Conscious Children.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? 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.

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Lead photo source: Thinkstock Images

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Why This Man Filmed Himself Having a Panic Attack

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Casey Cahill lives with an anxiety disorder. The 27-year-old from Kentucky occasionally has panic attacks and feels like many people misunderstand the severity of his illness. Cahill recently decided to film himself mid-panic attack to put a face to the disorder.

“I just wanted to make this video to show people that it’s real, OK? This is real,” Cahill says in the video below, which he posted to Reddit’s Anxiety subreddit on June 4.

Cahill has lived with anxiety since he was a teenager. “When I was 15, I dialed 911 thinking I was having a heart attack after looking up my symptoms online,” he told The Mighty in an email. “The EMT brought up that it was probably anxiety. Since then, it’s been a huge part of my life.”

Anxiety disorders are the most common mental illness in the United States, but the people who live with them still face misunderstanding and stigma. Cahill has had difficulty finding the resources he needs.

“A few weeks ago, I was looking on YouTube for similar videos, hoping I could find something that made me feel like I wasn’t alone, that I wasn’t going crazy,” Cahill told The Mighty. “Unfortunately, everything I found seemed pretty ‘mild’ compared to how I felt. So I’m recording myself to help and connect with people who feel like I did a few weeks earlier. You aren’t alone.”

Since the video was posted to Reddit, many people have commented that they strongly relate to how Cahill was feeling when he filmed it.

That’s exactly what I look like and sound like during a panic attack,” one commenter wrote. “Also, it’s nice to know that other men cry, too. I cry a lot during fits of anxiety and depression, and I always feel very ‘weak’ for doing so.”

“I feel like a lot of us… get caught up in anxiety and feel it multiply because we’re afraid to let others see it [and] try and rip us apart,” another Reddit user remarked. “You’re the man. Thank you.”

By being upfront about his illness, Cahill hopes to show others who live with anxiety that it’s OK to do the same.

“Seek help. Don’t be scared, don’t live in pain. People who love you will understand, and you can’t be concerned with the ones who don’t,” Cahill told The Mighty. “We can change [society’s] perception of anxiety.”

See Cahill’s original post and read more comments here.

Related: 31 Secrets of People Who Live With Anxiety

For more resources on anxiety disorders, or for more information about getting help, visit Mental Health America.

Do you have a story about your experience with mental illness? We want to hear it. Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. More info here. Thanks!

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