I recently spoke to a few people with ALS who all said, “I’m dying,” at some point during our conversation. I understood. They were recently diagnosed, trying to make sense of a sudden, terrible loss of control over their lives, their futures. To say “I’m dying” can be a way to acknowledge what is happening, while still taking back some of the power. “Now I know what’s going to kill me,” one man said.

Or it could just be a way to begin to cope with what we’ve all been told is the inevitable conclusion of having this disease.

But I’ve found it doesn’t work for me. I once tried looking in the mirror and saying, “I’m dying,” out loud to my reflection. It just made me want to laugh. I don’t feel like I’m dying. Even though any one of us could look into a mirror and say those words, and they would technically be true, when I said them, they sounded false.

If I die of ALS in two years, six years or 10 years, does that mean I’m dying now? Do you, healthy people of the world, get up and announce you’re dying? Probably not, even though you might wake up tomorrow and get hit by a car, be bitten by a poisonous spider or maybe contract a deadly case of dysentery. (I sincerely hope that none of this happens. Also, that last one would probably only be an issue if you were playing the video game “The Oregon Trail,” but it’s still best to wash your hands regularly.)

These words we use, they matter. Is my disease terminal? What if it’s the dysentery that gets me? More optimistically, what if all of the current attention on ALS results in treatments that take me off death row? Will I then be told, “Well, you were terminally ill, but the good news is now you’re not. The bad news? You’re still gonna die.”

It’s certainly accurate to say that I’m disabled, a word that I have a rather fuzzy relationship with. Sometimes I don’t mind it, or its close cousin “handicapped.” Sometimes I don’t care enough to mind. Other times, the words are like waking up and discovering you speak another language fluently. They sound wrong, as though they are clearly meant for someone else.

Sarah Coglianese.3-001

I remember being asked in a college class how I identified myself. There were a host of words I could have used: woman, white, Italian, brunette, daughter, sister, student. And later: wife, mother, runner, writer. At the time, I thought woman first. Then for a while after college, I used my job as a primary identifier. Now I think it’s mom that comes first, if something must.

But ALS defines me, too. In fact, it differentiates me in a way that most of those other words don’t. I can’t run from it, which isn’t saying much, since I can’t actually run from anything. Stupid jokes aside, it’s a part of me.

I can’t run, can’t walk. I’m disabled. There’s no getting around that word, either. But none of these: ALS patient, disabled, dying are very far up on the list of words I use to describe myself. There’s more to me than my disease, just like there’s more to my disease than just the dying part.

When we talk about life, I think we are talking about something that (we hope) is long and lasting. When we talk about death, we are usually referring to a moment or series of moments leading to the actual end of life.

So if I don’t say that I’m dying, it’s not because I’m in denial. It’s because, today, I’m not planning to die.

Follow this journey at speed4sarah.com.

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Since April 2011, the “Autism Daddy” blog has anonymously shared photos and stories on Facebook and on the Autism Daddy website. Now, after more than four years, “Autism Daddy” has decided to reveal his identity.

In a post published on his page on Sunday, September 27, he revealed himself as a 45-year-old man named Frank who has been working at Sesame Street since 1994. He even included photos of his face.

My name is Frank. I work at Sesame Street. I am "Autism Daddy". Find out more details about why I've given up my...

Posted by Autism Daddy on Sunday, September 27, 2015

 

Frank’s post goes on to detail his more that 21 years with the popular children’s television program and how his son, born in 2003 and diagnosed with autism in 2005 (and later epilepsy as well), changed the trajectory of his career.

He also goes on to say that he’s decided to reveal his identity now, although his wife and son will continue to be referred to by the nicknames “Wifey” and “The King,” because his two worlds, autism advocacy and his career, have collided. For the last year Frank has been working on an autism outreach initiative with Sesame Street.

In the past Sesame Street has produced outreach initiatives including helping kids with incarcerated parents and helping military families. Now, the company will be launching its autism outreach program in October to help families with autism as well as the general public.

Frank was heavily involved in the production of the video content for the autism initiative, which will be released next month.

So basically I’m outing myself for two reasons,” Frank wrote on his blog. “Because I’m extremely proud of the work I’ve helped accomplish and I want to share it with [you all], and because… I want as many people to see these videos and use these resources as possible.”

Read the full blog post here or check out Autism Daddy’s blogs on The Mighty


After arriving in Philadelphia Saturday morning, Pope Francis kissed and blessed a 10-year-old boy with cerebral palsy who was in the crowd with his family.

Francis had the car driving him stop so he could meet Michael Keating, The Associated Press reported. Michael was diagnosed with CP when he was 6 months old. He also has an intellectual disability.

Francis also met Michael’s parents, Kristin and Chuck Keating.

I had to turn away,” Chuck Keating told The Washington Post. “It was just so overwhelming.”

When the pope took his hand off him, [Michael] had a bit of a smile on his face,” Kristin Keating told the AP. “To me, in that moment, he must have felt that blessing…  For us, it was beautiful. For us, it meant something.”


Autism Speaks recently shared one of my blog posts, “What My Kid With Autism Wants You to Know About Him.” Well, actually, it was more like my son Ryan’s blog post since it was his voice and his words. There were a lot of lovely comments from parents who “got it.” They understood autism doesn’t define their children and so much more lies beneath that label. There was one comment, though, that pierced my heart: “My son was diagnosed today. I needed to read this.”

As I read this mother’s words on my blog post, I felt the same kick in the stomach, the same tears searing the back of my eyes and the same fear I felt all those years ago. Like. It. Was. Yesterday.

I wanted to reach out through Facebook and hug this mom — Can you work on that, Zuckerberg? — and tell her I know the heartache, the uncertainty and the fear she was feeling at that precise moment. I wanted to tell her as long as she loves him, as long as she advocates for him, as long as she accepts him, he will be OK. So I told her all those things. I tried to help her understand, but I knew my words would bounce off her shattered heart like a pogo stick.

When you’re told your child has autism, the kind, compassionate doctor may tell you, “Your son is the same little boy he was before you walked through that door.” But what they don’t tell you is you may not be the same person.

Something inside you shifts. You worry the dreams you had for your child may change. You wonder how you will afford all that’s necessary for him while you’re here and after you’re gone. But mostly, there’s the need for more: more information, more education, more answers, more patience, more awareness, more therapies, more advocacy and more love. More than you ever planned.

I get that now. But a mom who just recently had to process the words, “Your child has autism,” may not. And the difference between the two of us is I’m “here” and she’s “there.”

When I was there, I researched the words “cure,” “alternative therapies,” “treatment for autism” and “gluten-free and casein-free diets” In the end, we spent thousands of dollars on a listening program as a form of therapy to hopefully reduce the impact autism would have on Ryan’s life.

When I was there, I would watch him spin the wheels of his dump truck and beg him to actually play with his truck.

When I was there, I would watch him push the same button on an electronic toy over and over again then mimic the same noise to a tee and beg him nicely to stop.

When I was there, I worried so much about the boy who was yet to be that there were moments and days I missed the boy he was.

When I was there, I focused so much on trying to help him conform, to help him fit in and be like “all the rest” that I didn’t see how amazing his uniqueness was.

When I was there, I tried to stop his constant mimicking of television shows and video games and didn’t listen to the incredible way he was trying to communicate with me.

When I was there, I saw the label but didn’t see him and so I wanted more.

Being there is hard. I wish I could show that mom how much better it is when she gets here. I wish I could tell her that her need for more still exists, but it takes on an entirely new meaning.

Now that I’m here, I no longer look for more cures or more causes. I accept my son’s diversity and applaud every single step he takes, regardless of how different those steps may look.

Now that I’m here, I no longer try and get my son to conform. I give him the support he needs to feel proud about his differences and to feel more confident about who he is, while trying to help him understand what is acceptable and appropriate in a “neurotypical society” without ever making him feel less.

Now that I’m here, I no longer try and get my son to stop his unique way of communicating with me. Instead, I try and find more ways to communicate in his language, which always brings a smile, while still providing him the tools he needs to communicate in a way the world will understand him.

Now that I’m here, I give my son hope that one day more people will accept his differences and that those differences won’t really be so different. One day, the world will see more Ryan and less autism.

Now that I’m here, I still worry, I still wonder and I still have my “kick in the gut” moments. But those moments are so much fewer now that I’m “here” and not “there.” I’ve had more time to accept his differences and more time to understand his incredible mind. But mostly I’ve had more time to watch my son surpass all my fears and worries and show me there’s so much more to Ryan than autism. I’ve accepted the moment that brought me more pain than I could have imagined when I heard the words, “Ryan has autism.” But those words don’t define him or his future.

To the mom who is “there,” I know it’s hard because you need more: more time, more acceptance, more progress, more understanding and more awareness. You have yet to see the progress. You have yet to see all the “more” that he or she will do. And I know getting from “there” to “here” is different for all of us, but knowing we all get here together, makes the journey a little less lonely and a lot more appreciated.

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Follow this journey on The AWEnesty of Autism.


You there, in the lab coat. Yes, you. Put down the pen.

We need to talk.

You haven’t really looked up since we walked in. Last I checked, we were here for you to examine my son, Rukai, and you’ve only been asking leading questions and making notes, rating him against some invisible scale and ticking boxes. It’s incredible! That pen hasn’t stopped. Your questions haven’t stopped. And your paper has received far more attention than my son has, which tells me that frankly, you are wasting our time.

I have to tell you that it’s beyond difficult for me to extend the courtesy of calling you “Doctor.” It’s difficult because my son’s name is Rukai, and in the five minutes since we sat down, you have yet to say it. It’s difficult because my name is Maxine, and you keep calling me “Mom.” And there’s that pen, scribbling. Scribbling. Ticking boxes. Ticking me off.

You have called Rukai “they.” You have compared him to thousands of other people with a similar condition, but at last check, good sir, these other people are not Rukai and Rukai is not them. And I am not your mom.

You expect we will hang on every word and follow your directions to the letter. That we will gladly come back for you to monitor something that’s not presenting itself as a problem in reality. But on paper, it may. And therefore you have clear guidelines as to what you should statistically be monitoring.

But the scale tips to me when it comes to identifying what we should be monitoring. Just because Rukai has a disability does not mean we’re unable to look after him. If there were no third copy of the 21st chromosome floating around in his blood, you wouldn’t even consider his current condition worth monitoring. He is developmentally delayed and that is all. Other than that, we just don’t see any issues. But you just keep looking for them.

Rukai is a unique individual, just like you, and as his mom, I know him best. If you had spent these first five minutes looking at us and asking me whether I’d noticed any changes, or how his behavior had been recently — rather than immediately begin comparing him to thousands of other people — you would have his truth before you. I don’t care how many patients you have seen over the years. You have not met Rukai until today, and today is when you first learn about Rukai.

Statistics are guesswork. Life is too short to live tunnel-visioned in the grey.

I find it both comedy and tragedy that society is perennially patting itself on the back for celebrating difference: in religious belief, gender identity, political persuasion, hair color, body shape, and so forth. Yet here, when you’re talking about the very thing that makes us unique — genetic material, human DNA — you group, box up and throw away. You say “they” and tick those boxes.

And now that you’ve not paid him any attention, you go and run some play-based testing. And guess what? Just like any other kid on earth, if you aren’t engaged with him, he won’t be interested in you. And he won’t play. Do not dare assume this means he cannot.

And you write in terms of how he “is.” Based upon 60 minutes of a life that has already gone on days, weeks, years. Sixty minutes with your pen inking commentary which would fade and wash away if you left it out in the rain.

Place Rukai out in the rain and he will tilt his head back and laugh and flinch and maybe go and stomp a puddle. He will not fade. He will not wash away.

I’d ask you to remember what brought you to medicine in the first place. You wanted to care for people. To serve. To listen and to respect. To advise and to heal. But with years of practice, I’m sure there’s monotony, repetition, boredom. Paperwork. I suspect it’s become far too easy to categorize people just to get that revolving door of endless patients to cease spinning. It might seem so much easier to find a common thread and close the chapter than to uncover a new story.

But I challenge you to remember why it matters to society that we celebrate difference. Remember why Rukai matters. Because we all have a unique contribution to this life — 46 chromosomes, 47, whatever count, he counts. He has a name and a story, and he has unique potential. He has likes and dislikes. He is not “they.”

Follow this journey on Down In Front, Please.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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.


As the mother of a child with Down syndrome, I sometimes feel like advocacy/raising awareness is just as much a full-time job as motherhood and my full-time job. But sometimes you have those really great snapshots in time when you feel you’ve made strides in advocacy and awareness, and those moments provide the fuel you need to get through the times it seems allies are scarce.

Each year, the National Down Syndrome Society (NDSS) runs a photo contest where pictures of people with Down syndrome are chosen to be part of a video that plays on the big screen in Times Square. The video, paired with the NY Buddy Walk, serves as a sort of kickoff for October’s Down Syndrome Awareness Month.

We submitted a picture this year, choosing one that followed the year’s theme: inclusion. It’s hard to imagine what one picture captures inclusion, but for us, it was a rather ordinary picture — a candid photo taken just after a soccer game. My son, Evan, played on a team of typical kids, and after the game, he stood with his snack next to his teammate and cousin, Andrew. For us, that ordinary picture just resonated, and we submitted the photo.

Evan and his cousin, Andrew, in their soccer uniforms

When we received the message that our picture was selected for the video, we were so excited and touched!  Our son would be part of something big that would be an awareness tool. For us, the message is huge. It’s the thread that holds the fabric of society together: inclusion. We booked our hotel. We were going to New York.

For us, being selected for the video was an incredible honor and thrill, and it became even more meaningful when a local reporter contacted me to talk about Down syndrome, the picture we submitted and the video. Just a day later, my son and nephew were in an online story, and the next day, they were on the front page of the Lansdale Reporter and were in another paper, too.

On September 19, we stood with hundreds of people with or touched by Down syndrome and stared up at the enormous screen. While we watched, New Yorkers, probably many of whom are not so closely touched by Down syndrome, saw our children, saw the facts about Down syndrome playing on the screen and maybe learned a thing or two about the great capabilities of people with Down syndrome.

Throughout the audio-less video, the crowd provided its own soundtrack with cheers at the moment someone saw themselves, their loved ones or the new friends they made standing near them on the screen. At 42 minutes and 49 seconds, we saw Evan’s photo on the big screen in Times Square. It was a truly proud mama moment that brought tears to my eyes as I cheered, snapped pictures and tried to point out the picture to Evan. He missed it, but we have the newspapers, the pictures and the video to show him.

The photo of Evan and Andrew on the big screen in Times Square

After the video was over we went to Central Park to participate in the NYC Buddy Walk, where we continued our awareness-raising activities. We’ll be participating in our own local Buddy Walk (the Buddy Walk for CHOP) on October 4. We’ll be celebrating abilities, awareness, and acceptance for people with Down syndrome. 

This time was filled with so much celebration of acceptance and awareness. Sometimes it seems like you really have to search for these things. Other times it’s plentiful, and when it is, it can breathe so much more energy into you for the times when it’s not. I wish for all of you similarly wonderful experiences in acceptance and awareness.

Real People. Real Stories.

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