When I published a piece on the Autism Speaks website called “Love Letter to my Autistic Son for When I’m Gone,” it clearly resonated with many people. I read every single comment on the website and Facebook page, and responded to as many as I could. The comments were both lovely, and in some instances, heartbreaking.

Many recounted their fears of what their son’s or daughter’s life would be like when they were elderly and or when they had passed away. One comment I read in the myriad of places I posted the piece stuck out to me in particular the day the piece went “viral.” In it, the reader blessed me. Then, she intimated that perhaps my son’s fate would differ from what I imagined it would be, and that perhaps one day he would become more independent than I thought. In my mind this equated to, don’t give up. I let her words roll around in my brain for a while as I tried to construct a response. Eventually, I quit.

The truth is my son is almost 12 years old. H unnamed-37 e has two words he uses independently, namely “popcorn” and “mama,” and sometimes still uses means other than words to acquire those things. He still needs help with going to the bathroom and minimal assistance with dressing and grooming. He is one of the lights of my life, but he requires the same constant supervision he needed as an infant and toddler.

One day when his father and I are gone, unless he lives with his brother, he will potentially be in the care of people not yet born. He will likely never live independently.

And to me, accepting this does not mean giving up.

Eleven years ago when he was first diagnosed with autism, I completely wanted an independence for him. At the time I lived in a state that only offered eight hours of Early Intervention a month, rather than the 120 hours studies showed he needed if we were to ever be independent. For almost a year and a half we labored together, my small son and me, as I desperately attempted to elicit sounds from my 17-month-old, then 2-year-old, then child approaching 3. I still read those “What to Expect” books and religiously studied their milestones, often feeling despair at how much he’d fallen behind.

I don’t remember when I finally realized he likely won’t be one of those kids who no longer needs a diagnosis, or move to the milder end of the spectrum. It was more of a gentle dawning for me, a realization that marriage, college and independent living were likely not in the cards for my eldest boy. I grieved for those choices he might never have, but even then acknowledged these were life choices I had needed to be happy. My boy didn’t. This realization helped me shelve my grief and move on to accepting his probable life trajectory: school until he turns 21, hopefully some sort of meaningful employment and a life spent living with constant support.

And I realized that shedding these more “typical” dreams is not giving up. Instead, I’m being realistic about my son’s future and planning for it in the best way possible.

I understand what the woman in the comment probably meant. I don’t know exactly what the future holds for my child — none of us do. But the best gift I can give to him is valuing what he can do and putting the appropriate supports in place the best I can. I will always regret I won’t be here to see him draw his last breath. In my fantasy world I live to be 120, and Justin passes at 84. I hold his hand as he is ushered into the great unknown.

It’s good to have goals.

But as controlling as I am, I can’t make that happen. But what I can do is accept what lies before him and try to construct for him the best life possible. A life where he remains the joyful, ebullient soul that he is. A life where he is productive and safe. A life where he is loved the way he deserves.

A life that never means giving up.

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The decision to put your life out there for public consumption is a trying one. The decision to open up your child with special needs to the public is especially complex. I constantly weigh the pros and cons. I constantly try to respect his privacy and rights as an individual.

He can’t yet, but I believe with all of my soul that he’ll read the things I write about him some day. I know he’ll have questions about my deepest thoughts and emotions. I want him to know the reasons behind some of these choices.

I never anticipated the positive effect my writing would have. I never anticipated the “me too” comments and how not-alone they would make me feel. When the “me too’s” started coming from the other side of the globe, it was overwhelming. When my blog started, it all about him. But I have found such support and love and “me too’s,” it has become my little piece of therapy. I honor and thank every single person who has chosen to click that “Like” button on my Facebook page. They each are another brick in my foundation. I mean that with all of my heart.

This is what I want my son to know:

You’ll read all of this some day, buddy, and learn about your dad. I hope it makes you laugh. I hope it makes you think. I hope a lot of it makes you proud.

You’ll probably have a lot of questions. The first may be why I chose to publicly share so much of our personal story. The answer is right here on my Facebook page. Do you see that number next to the word, “Likes?” Click on it.

These are the people who understand us. These are the people who accept us. These are the people who share our fears and struggles and victories. These people, spread across the planet, are our family. At some point over the last few years, your dad wrote something that made them smile, or cry, or laugh or think. They decided to join our little journey and watch us grow. They became very important to your dad. They gave him support or lifted his spirits when he was down. They made him feel like he wasn’t alone. They gave him the amazing gift of feeling like he helped them in some small way.

They sometimes thank us for sharing our lives. But — and this can be our little secret — they have given us so much more.

unnamed-36

A version of this post originally appeared on the Bacon and Juice Boxes Facebook page. 


The first time my daughter ever talked to me, really talked to me, was from under the covers, in the midst of our bedtime ritual. Hairwashing and teethbrushing and pajamas and stories. Bantering and bargaining with her sister. She started to sing a Christmas song but the words were her own. She was using the holiday melody to help move the words, which so often get stuck inside the complicated gears of her mind, to tell me she loved me and wanted me to stay with her. And for the first time in four years, I felt noticed, needed.

Autism has many potential tells. Sensory sensitivities and rigid thought patterns. Self-stimulating behaviors, repetitiveness, social delays, gastrointestinal issues and sleep disorders. We see some of this and none of this in varying degrees, but thankfully, sleep is not a problem for our eldest daughter. She goes to bed relatively easily and would sleep until late morning every day if it weren’t for the clamor of siblings.

Thankfully because bedtime in our home is essentially a series of battles fought upstairs and down; we become negotiators, defenders of “8 p.m.,” explaining the meaning and importance of sleep to three small people who want nothing to do with it. It is like this for the better part of an hour. It is pure folly. But once everything that needs to be cleaned has been cleaned, once the last bottle has been served and the last story read, once everyone has found their usual place for the night to fall… a quiet settles over our home.

They often fall asleep in our bed. It has become the go-to reward: to sleep in our room. They follow the same routines, but then crawl up and into our bed, bury themselves in the layers of pillows, sheets and comforter. Cotton and down. Bliss.

They settle quickly this way. The happiness of this reward must be overwhelming, and they are a precious mess of dangling arms and legs in no time. It is the perfect ending to a typically long and wonderful day, filled with the big emotions that characterize motherhood’s highs and lows and in-betweens.

Hours later, wrapped loosely around us, we carry them to their room and plant them in the coolness of their unopened beds. Their breathing is heavy and reliable. The same. You couldn’t tell neurotypical from anything. Autism is nowhere to be found.

I take great comfort in this. Sleep is the great equalizer. On bad days, it is the reminder that we get to start over tomorrow, that change and adjustments are possible. When my daughter sleeps, her body is still and calm and full of peace and vibrant dreams. Nothing is being measured or recorded. No prompting for attention or eye contact. No three-part directions to follow. When she sleeps, I imagine her taking apart the confusing structure of her time in our world and piecing it all back together in a shape that makes more sense. She’s just like anyone else when she is sleeping, no tics or tells. No IEPs or 504s, no social goals or gaps to close.

And I am just her mother, without concern or special needs to attend to. I get to remember what it is just to love her, simply and beautifully. Just: love her. For who she is and for who I am. A mother, a daughter, a wife, a sister, a woman, a girl…

Just people, navigating a vast and often perplexing world, trying to pinpoint what is positive and meaningful, trying to keep these things whole as we acclimate to the waters of disability. Trying to construct something useful with the pieces that don’t quite fit. Taking comfort in the hours of rest that are promised when the sun goes down, our daily bread, our dependence on tomorrow and another chance to take a few steps forward.

Follow this journey on Betty Sweet Writes.

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Weeks after my son’s epic meltdown in REI, I heard the words I should’ve said. I’ve been trying to use them more ever since.

When I look back on the meltdown — by far the worst, most public one he’s had — it seems like a movie.

He was about 10 and in a boot cast after badly spraining his ankle. We had to switch him to super-sturdy hiking boots so he could stop using the cast. We’d tried once before to buy them at REI, but something in the store set him off.

While many autistic people like my son experience sensory overloads in places like Target, my son is able to handle that store and even enjoy it, bright lights and all. But REI sets him off. I still don’t know why.

That day, with the help of his service dog, he’d made it through challenge of trying on boots and finding ones that fit. We’d navigated the gauntlet of busy shoppers, curious dog lovers and racks of stuff.

One thing stood between us and the freedom and fresh air outside: a long line.

He started getting agitated. I kept repeating, “PT Amy says we need to get these boots so we can take off your cast. Just a few more minutes.”

I honestly don’t know how long we were in line. It seemed like half an hour. Half a day, even. But my memory is skewed by the fervor of his meltdown.

Finally, he blew. Yelled. Kicked. Laid down on the floor. Threw his beads.

The way I remember it, the crowd in line collectively took 10 steps away from us and gasped. In my mind, there were about 50 people in line and hundreds of shoppers, who all froze at once on cue.

The guy in front of me with a complicated return kept staring at his phone, unwilling to give up his place in line.

I kept thinking, “Why don’t they help me? Can’t they see what’s happening? A boy in a cast. A service dog. It’s pretty obvious what’s happening here, people!” I felt so alone. And I felt we had to get those boots right then.

One mom did help. She retrieved the beads then went back to her kids. She gripped them tight, her expression clenched in fear and pity.

pair of shoes

Finally, they brought in another salesperson. We bought the (expletive deleted) boots. The meltdown was over.

A few weeks later, I described the incident and repeated my internal monologue to my therapist.

“You could have said, ‘I need help,’” she gently suggested.

Never has something so obvious but so elusive been revealed to me.

It honestly never occurred to me that I could ask for help for myself. I’d been so used to helping my son and being his advocate, his explainer and soother in chief, it just never occurred to me to say, “I need help.”

I learned a lot since that day, not the least of which is to respect my son’s sensory needs, to get help for myself because that means helping my son, and to stay out of REI.

My first inclination is still to soldier on my own, but I’ve learned to stop, breathe and ask for help.

Three simple words that can be so hard to say for those of us special needs parents caught in our own flight-or-fight moments.

Three simple words.

Sophy Chaffee and her son

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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I’m 25 years old, a law graduate and Cypriot-Sri Lankan. I grew up in Cyprus, but for the last eight years, I’ve been living in the U.K. I’m the daughter of strong, supportive parents and sister to the greatest guy, Christos.

Christos was diagnosed with autism when he was 2. It has been challenging at times, but it has also been my driving force. Watching Chris progress over the years has been my inspiration. Seeing him go from not being able to tell us he is thirsty, to now being able to tell us he is sad and why, has been a journey not many understand.

boy at disneyland

Autism made me protective of this community of families going through something similar. So I write to raise awareness. I want you to know, I want you to learn, I want you to tell people about autism. I need to know he’ll be cared for, he’ll be accepted, he’ll be given opportunities and the chance to grow, develop and be part of society.

From his rolling around on the floor screaming phase, to us having to watch “The Lion King” over and over again, to his violent phase, to the intelligent, caring boy he is now, I have been his sister. To say it has always been a pleasure would be a lie, but it has always been an adventure.

These are my confessions as an autism sister.

1. It felt like my childhood was more about him.

I couldn’t play with my little brother, can you imagine? My mom said I tried a lot, but I rarely ever got a response. We stopped going to restaurants and parties. My afternoons were about his speech exercises, his timetable, doing things that would be comfortable for him. All conversations were about autism. My childhood was about him, and now my life is about him.

2. I wear his clothes when I want to feel close to him.

Because I live abroad, I like having something of his. When he catches me wearing his clothes, he’ll point and make me apologize. Sometimes he even makes me take it off. He’ll point and show everyone the jumper I’m wearing is his; it’s Christos’ jumper. And then it’ll be over and he’ll go back to what he was doing and ignore me.

3. I stayed up most nights repeating his sounds with him until he went to sleep.

Repetition is big in our house. I don’t remember how old he was, but one night we were saying “Goodnight” and he starting making an “Ow” sound. We used to go to bed and “Ow”-ed for what seemed like the entire night until he went to sleep.

4. I loved dancing with him when we were younger.

We used to switch off all the lights, grab flashlights and dance to this song he loved over and over again in our pajamas. He won’t let me dance with him anymore; he’ll make me stop and sit down. I’ll usually dance anyway and get a few seconds with him before he gets annoyed.

brother and sister selfie

5. I pick fights with him over silly things.

When I was little, it used to be for interaction, but as he grew up, it kind of became our thing. I’ll start singing in the car (which he hates) and he’ll get annoyed; if I’m in a good mood, I’ll keep doing it. He’ll be upset with me if my tone changes, or if I yell, but then he’ll cuddle and laugh to make me smile. I pick fights with him because it’s something we can do together as siblings. We can’t talk about our days, we can’t go out to dinner, we can’t text or Skype or share funny stories about our family. No, I’m not abusing my autistic brother. I pick silly little fights with him because he’s my brother and that’s what you do to younger brothers.

6. He’s the reason I went to University.

There’s this weight on my shoulders and it will not lift until I know I can give him everything he wants. Christos doesn’t ask for much: he wants his music, his food and the pool. It doesn’t matter because if he wakes up one morning and asks for a hovercraft, I want to be able to give it to him. No one expects this from me, and no one has ever spoken to me about the day I will be his carer, but it’s something I have been preparing for since I was 17. That’s the end game, that’s the dream.

7. He makes me strong.

There’s this feeling that takes over when I think of my brother. Maybe it’s from reading, maybe it’s from witnessing how strong my parents are, maybe it’s from seeing how someone so small can be so fierce, how someone who cannot speak can progress right in front of my eyes. I’m not sure what it is, or where it comes from. He taught me that life isn’t about coping, it’s about taking every day and making it worthwhile. It’s about excellence, possibility and greatness. I had to learn from a very young age that nothing is impossible because every day of a life with autism can be about making the impossible possible.

8. I start my days away from him with my favorite photos of him.

He has this picture from when he was a few weeks old in which he is mid-cry and his face is hilarious. It’s on my bedside table, and it makes me smile every day. I have another one with his mouth full mid-eating a huge plate of pasta and another one mid-sneeze. I try to capture all his silly faces.

9. I wish people did this instead of stare.

I’d rather people just asked me about him rather than stare and sometimes grab their kids and run as if my Christos would hurt them. I’ve yelled at people before. Sometimes I just stare back and see how long they keep it up.

10. My biggest confession: I wouldn’t be half the person I am today if it weren’t for him.

He has given me so much. He has been the driving force behind everything I’ve done. Everything I want to do is because of him. He is the light that guides my life and without him, I would be lost. There is nothing I can’t face, there’s nothing I wouldn’t do for him. He made me better, he gave me purpose.

I wouldn’t change him for the world, but he gave me the strength and will to try and change the world for him.

brother and sister smiling


There’s a child at this event as cute as a Baby Gap model, with thick tufts of brown hair sticking out from under his baseball hat.

“I’m Charlie,” he says, sticking out his hand. “I’m 4.”

I smile at him, reaching out my hand to meet his. But before we can shake, he runs off to chase the other children.

“I’m sorry,” his mother says. “He has autism and gets easily distracted.”

She shrugs sort of helplessly, as if to say, “Hey, what can you do?” 

I nod my head. Autism. I do understand, I think about telling her then. Because, of course, at this event for children with autism, my child, too, has autism. It doesn’t take her long to realize this, because as we speak my son is making his way through the room, flapping his hands over his head and rocking his whole body in our direction. His mouth is bulging on one side, filled with some raisins he found in the car on the way over. He keeps them buried in his cheek like a chipmunk.

“Dominic!” I call out to him and he bobs his head, bouncing in my direction. “Dominic,” I say quietly, steering him toward the other mother. “Say hello.”

“Hello,” he says, his eyes unmoved.

“Tell her your name. What is your name?”

“Dominic,” he answers. This is a big chunk of his verbal ability, answering these questions. He is working hard. And because the light and the noise and the newness of this room are colliding in a wild cacophonous swirl in his frontal lobe, he wrenches his mouth up in distress. He cries a little, puts his hand over his ears. He will stand and wait; he knows what is expected of him. But it hurts him, the colors and noise of this place. He is deep within himself.

This is my son. He has autism, too.

author's son at a restaurant eating fries and macaroni She looks at us strangely, not unkindly. She isn’t sure what to do. In fact, everyone — all the other parents, the volunteers — they do not know what to do with my son with autism. He is the “strange” one here, even though in his small classroom at school he is at times the “highest functioning” one. Even this mother, who has also battled with the diagnosis process, with stigma, with “normal,” does not understand “our” autism. Because this is not the autism that is here, at this event for children with autism, nor most places these days. Here, the children speak in sentences and follow commands. Begrudgingly, yes. With difficulty, some. But none of them are on the island of disconnect.

“Our” autism is not the autism everyone knows.

My boy, with his “classic autism,” the kind that used to be the only face of autism half a century ago, is the one who does not belong now. We do not have a home in the “real” world, where children easily smile and make friends and answer questions. And we do not often have a home in the community of autism, where the children are almost always higher functioning. Where the children can speak or kiss or hug. Where the children are not quite “normal,” but not recognized as wholly “abnormal.”

Now, autism is the quirky kid in the classroom who interrupts a lesson with his incessant talk about world capitals. Autism is the girl who can’t understand the gum-snapping sarcasm of her peers. Autism is Rain Man, with his barely-but-functional speech and misunderstanding of nuances, his bright and amazing understanding of facts, dates and places.

Autism is them. We are all the same, and not the same. And they are no way less “disabled” because they are “higher functioning.”

But it is more than them.

It is the adults with severe disabilities who watch “Wheel of Fortune” religiously in their living rooms at night. The ones who have never had a job and who live with aging parents who wring their hands with worry, wondering, who will help him dress when I am dead and gone?

It is the 14-year-old boy, who in anger, fear and unspoken loneliness, wanders at night, slips out the door — his parents, sick and unsleeping, phoning police, searching for his shadow in their car headlights. Come home, come back to us. 

And it is my own boy, unable to answer basic questions. How was your day, Dominic? How old are you? Do you feel sick? My own boy who has the route to his school memorized, down to every stop light and lane change. My boy who can use his mind’s eye to photograph the make and model of the elevator at the museum from just one trip, just one floor, going down and then come home and type it into his iPad with perfect spelling. Schindler Elevator. Floor Eight. Seven. Six. Five.  

YouTube videos for days, I watch him watching on his iPad with pure excitement in his eyes, his arms flapping in anticipation of the doors on the elevator opening. He is joy right now. This is autism, too.

My own boy, who has never said “mom” with authenticity, who might not date girls or drive cars and who struggles with tying his shoes at 11 years old. His mother, who wrings her own hands in worry. Who will help him when I am dead and gone?

That is autism, too. 

We are autism, too.

Embrace awareness. Figure out the Why, the How and lead us back to the I Don’t Know. We are not sorry for ourselves, we accept what we can not change and work hard for what we can.

But please, do not forget us. The adults, the ones with severe disabilities. The non-quirky kids, the wholly impaired. Do not push us out or make us redundant.

Our face of autism might not seem as perfect to some. But we are community too, and we want to be there with you.

Maybe our voices aren’t as loud, because maybe we can’t speak at all. Maybe we are hard to see. Maybe we are not in the classroom, maybe we are in a different school altogether, maybe we are not on television. Maybe we are outside, flapping our arms like wings, looking up in the dark with seeing eyes, at the lights of planes in the nighttime sky.

But we are still here. We are autism, too.

Don’t forget to remember us.

son sitting in car with hand out the window

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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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