The Letter I Think My Son With Autism Would Write If He Could


Dear New Friend,

When you first meet me you might notice…

  • A little guy who looks like any other 4-year-old boy.
  • I often have bed head and scrapes on my knees.
  • I play with trains and cars and pirates and Legos.
  • I like to get dirty and wrestle.
  • I laugh with my whole heart and have a gap-toothed smile that could make your knees buckle.

If you look a little closer you might also notice…

  • A little boy who won’t always look you directly in the eyes.
  • A boy who has trouble sitting still and using a whisper voice.
  • A boy who seems to be acting too young for his age.

Maybe you’ll think I’m rude. Or disrespectful. Some have even called me spoiled. But those who have spent time with me — they know the real me.



Loud noises and sudden movements can make me anxious, so tread lightly until you’ve earned my trust. I might growl at you and pretend I’m a dinosaur when we first meet. This just means I’m nervous. Be patient with me, and I’ll do my best to warm up to you.

If I do talk to you, I’ll probably use my silly voice, which is hard for you to understand. Then you’ll have to look at my mommy or daddy to translate for me. They do this a lot.

If you try to touch me or give me a high five I’ll probably be reluctant and shrink back. But this doesn’t mean I don’t like you. It just means I’m being careful. I don’t let people in quickly, but when I do, you’ll get my whole heart.

If you come to my house, there’s a good chance I won’t be wearing a shirt… or pants. Clothes hurt my skin sometimes –especially collars and buttons and long sleeves and tags. So my mommy cuts the tags out for me.

If I come over to your house for dinner, please don’t get your feelings hurt if I don’t eat your food. You see, I’m a picky eater. Most foods smell weird to me and make my mouth fill with saliva, and I don’t like how that feels.  Strange smells and textures make me anxious.

In fact, I get anxious a lot.

I’m scared of the dark and the sound of the toilet flushing when I’m alone in the bathroom. I’m afraid of doctors and blood and pain — and I love Band-Aids because they hide what’s broken and help me feel some peace. I love to go swimming, but I’ve never put my head under the water. If you were to stay the night at my house, you might wake up several times a night to my screams and cries. Don’t worry too much, I’m just having another bad dream. I have them a lot.

Often times I get so frustrated that I hit and kick the people I love. Sometimes I’ll even throw toys and knock over furniture when I’m upset. I don’t mean to. I don’t want to. I just can’t help it, and after I do it, I feel even worse.

Then with tears streaming down my cheeks, I’ll tell you how sorry I am for hurting you. And even though it’s not always easy for me to apologize, I promise I mean it. Because I know it makes you sad. It makes me sad too. I want to be able to change for you, but I don’t know how — and that makes me even more frustrated.

This world I live in seems to move so fast. And sometimes I just wish it would slow down. I wish I could stay in my undies and eat cookies and play cars and jump on my trampoline and swing on the swings all day. The swings help me calm down.

Rules give me comfort and structure, but I can only take so many of them before it can be hard for me to live in my own skin — before I begin to feel claustrophobic, suffocated — and then I lash out. I have so many thoughts in my head and feelings in my heart, but I can rarely find the words to share those emotions with the people in my life. It feels like we’re speaking a different language, and that can be a very lonely place for a 4-year-old boy.

I feel extra frustrated when things don’t go the way I imagined them in my head. Like when my favorite donut place runs out of the pink ones with the sprinkles. Or when I accidentally color outside the lines in my work book. Or when my sandcastle falls over or when my friends don’t follow the rules of the game we’re playing.  Those things make me feel like I’m losing control — and having control is what makes me feel safe.

I know my mommy worries about me a lot. She’s been trying hard to be less worried lately because she has learned this only makes me more anxious. She’s been trying to be stronger… for me.

Sometimes I can here her praying at night. I hear her asking Heavenly Father to please oh please, above all else… make sure Wesley’s happy. I hear her ask for strength. And perspective. And patience. And softness. And faith. Sometimes I want to run in when I hear her praying and give her a big hug so she’ll know I am happy, I really am.

Pirates and treasure hunts are my favorite. And the Octonauts. I love to go on bike rides with my daddy and play frisbee at the park. I love my friends with my whole heart, and I get overwhelmingly excited when they come over to play. Saturday morning pancakes and impromptu afternoon trips to the beach are sure to make me smile. My baby brother is my best friend. He loves me no matter what. Plus, he’s funny too. I can count to 29, and I know all my letters and shapes. Nothing makes me more excited than seeing the look on my mommy and daddy’s faces when I write my own name. They’re always cheering for me. And I love that.

I ache for the people I love. I want to be around them all the time. My grandparents, my aunties and uncles, my cousins. I like to have all the people I care about in the same room with me — that’s when I’m happiest. Because family is my favorite. Sometimes I ask my mommy if we can have a big family like they do on “Full House.” Maybe one day, honey. Then she laughs and ruffles my hair.

And even though it’s not always easy to be me, I know that I’m a lucky little boy. Because I am loved. Boy, am I ever loved. I can feel that love every day. And this gives me strength.

To be brave.
To take deep breaths.
To try new things.
To let new people in.
To give love back.

Because I have so much love to give. And so much to teach my my mommy and daddy. So much to teach the people in my world. About compassion and patience and perseverance. And I know that sometimes things need to be tougher for me so I can learn those important lessons and pass them on to the ones I love. It’s an important job for a 4-year-old boy, but I’ve got this. So don’t worry about me too much – just love me, please.

Love, Wesley


This post originally appeared on Little Miss Momma.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.



This Young Woman Captures What Depression Feels Like in a Beautiful and Heartbreaking Way


This is a powerful and unflinching look at a very serious condition.

Sabrina Benaim, 26, is a spoken word poet from Toronto who struggles with depression and anxiety, according to her website. In the performance below, she spectacularly articulates what it feels like to live with these conditions and the frustration that comes from trying explain herself to others.

Watch Sabrina Benaim’s “Explaining My Depression to My Mother” at the 2014 National Poetry Slam in the video below:

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. Head here for a list of crisis centers around the world.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


When I Started Eating Lunch With My Classmate With Down Syndrome


Differences surround us. They can define us. They can hurt and separate, shape us and inspire us.

In fifth grade, the last thing most people want to be is different.

That’s when I met Caleb, as we were waiting for the bus to take us home. Caleb was obviously ready for the school day to be over; he kept saying, “Bus, bus, bus.” I was unsure what to think at first, but I knew, much like me, Caleb wanted the day to be done. But that seemed to be where our similarities stopped. He was unlike most of the other fifth graders I knew.  

Caleb has Down syndrome.

He spent most of his time in a different classroom than the rest of the other students. He often sat in a different section of the cafeteria. He spoke differently; he acted differently.  

But our differences didn’t scare me. In fact, our differences brought us together.

Around this time, I became involved in the Adaptive P.E. program at school. The program was voluntary and allowed me to work with my peers with special needs. I definitely wanted to be a part of it. Not only did I enjoy the program, but I learned more about Caleb.

photo (18)

Every day at lunch, I would sit with him. I thought this would be tough at first, because I was unsure how to interact because of our differences. But it was actually fun. After lunch, I would walk Caleb to P.E., and we would play together. We would bowl. We would dance. We would laugh.

And I began to look forward to spending time with him.

Others didn’t understand what was on Caleb’s plate, like I did. Others judged him. They looked at him with strange faces. They excluded him from activities.

One day, at recess, this all changed.

Caleb and I ventured outside to play soccer together. I assumed the game would only be the two of us. But much to my surprise, all of the other kids joined us. And this time, no one judged Caleb. No one made fun of him. No one left him out. It was Caleb’s soccer game, and I stood in amazement and happiness when I noticed the other kids give Caleb the ball and let him score. 

Caleb has taught me that it’s OK to be different. He’s reminded me to treat others the way I want to be treated. I know, without a doubt, he is out in the world somewhere, teaching others this same lesson.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


My Son Did Something Naughty… and My Heart Swelled With Joy


IMG_6746 I’ve been to many parent/teacher conferences. I have three typically-developing children — well-behaved, high achievers. In these later years of their schooling, I’ve received a lot of forms with “No conference necessary at this time” checked off. In the early years I went in to confer with teachers, who, to my surprise, never wanted to talk about the sheer wonderfulness of my darlings. There was always a problem. Most of the time the problem was talking in class.

“I’ve tried him in every seat in the room,” my oldest’s first grade teacher complained in her beautiful Irish brogue. “Finally I put him in the back and he talked to himself!”

It was the same with my two daughters. All I could do was say how sorry I was that they were disrupting the class, promise to talk to them, and do so. Then I waited for maturity and the passage of time to do the real work. I myself was often written up as the chatterbox, my name chalked on Mrs. Turtur’s blackboard circa 1976.

Now I have a son in kindergarten who doesn’t talk — or walk or see. When I go in for a conference (and it’s always necessary) I already know we won’t be discussing his sheer wonderfulness. The life and education of a special needs child is a continual problem-solving process, and I’ve become a de facto member of the Child Study Team.

Last year I went in to meet with T’s TVI (Teacher of the Visually Impaired). They’d been working on nesting and stacking cups. T uses an adaptive activity chair with a tray in these sessions, and Miss R. told me when he grows frustrated with the activity, T pushes the cups off of his tray with a sweeping arm motion.

“But Mrs. V. [my son’s aide] has gotten very good at catching the cups in mid-air and putting them right back,” Miss R. assured me. “So… lately he’s started throwing them backwards over his shoulder, instead.”

We looked at each other for a moment, and then I burst out laughing. Miss R. did too.

“I know… it’s wonderful, isn’t it?” she said. “So typical for his age, so creative…”

“So naughty,” I filled in.

It’s so hard for T to make himself known as a person in the world. At home we know him well, but it’s hard sometimes for us to understand what he wants and needs. He has only a few signs and sounds he uses to communicate. He relies on others to move him around and bring him things. We make so many decisions for T, and many of them are guesses.

I never expected that my heart would swell with joy when I heard my little boy was doing something naughty. I went around bragging about it for days. He’d given me the gift not just of rebelling against something, but finding a new and better way to rebel when thwarted. Sometimes, when I worry, I take that memory out and picture Miss R.’s impression of T tossing a cup over his shoulder with determination and aplomb.

Naughty — but also very nice.

The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected].
Hint! Some gifts don’t come in packages.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


The Holiday E-mail All Parents of Children With Special Needs Should Read


Ah, the holidays…

They always end up being so hectic and stressful. Add a child with autism in the mix and things become even more chaotic. I wrote to our therapist about my daughter, Lila, and Christmas. The truth is, the gifts mean nothing to Lila. She couldn’t care less. Know what she wants for Christmas? Her balloons and ping pong balls and for Mommy and Daddy to be at home playing with her.

We all have these preconceived ideas about the holidays and what they should look like. Baking cookies with our children, watching their eyes light up while we explain Santa and the reindeer to them, listening to Christmas music, decorating the tree together, having a picture taken with Santa, looking at Christmas lights, visiting family, all while our perfectly wrapped presents sit under the tree. And we don’t stress – we just enjoy the holiday season, right?

Is that really how it is for anyone? I have my doubts. You know… we’ve already re-arranged our entire lives for Lila and her autism, but for whatever reason, it never occurred to me we could flip the script on the holidays as well. Our SoonerStart therapist, Janet, sent me the following in an e-mail. I genuinely believe it’s something all parents of children with special needs should hear, so I wanted to share it with you:

There are so many social norms and expectations surrounding the holidays. It’s like there’s a big book of items that are stereotypical and everyone feels if they aren’t ticking off a certain number of them, they aren’t doing it right. So many holiday things are hard for people with ASD. Different foods/cooking smells, longer travel times to infrequently visited homes with unfamiliar people and a different schedule, things you can’t touch, sitting on Santa’s lap, opening gifts, more shopping trips, all the forced social interactions, I could go on and on…

This is a great opportunity to ditch all the “normal” expectations and start to develop BETTER, new, fun ways for you all to do the holiday thing. Free yourself from all that garbage and follow her lead. You can celebrate in an AUTHENTIC and true way to your family. Your special twist on things will mean so much more to her than ANY gift. It’s kind of exciting and freeing isn’t it – to get to rewrite the book and tick your own things off? You are going to have a much better time than a lot of “normal” families. Makes you almost feel sorry for them… 🙂

So, please take that advice and do as you wish with it. I hope it helps you and your families like it has helped me. Our holidays won’t ever be what typical families would consider normal, but maybe – just maybe — they will be even better. Happy Holidays and much love to all of you and your beautiful, different little families!


This post originally appeared on Dancing With Autism.


I Would Have Made an Awesome Soccer Mom


I had a few hours of free time on Sunday, and because I lead a very sexy life, I used the time to clean out my pantry. It’s a little room off my kitchen that has, over the last six years since my son came home, transitioned from a cute, chandeliered office/pantry to an enter-at-your-own-risk-I-can’t-be-responsible-for-what-falls-on-your-head room. It was time.

Photos, party supplies, glue guns, three coffee makers, expired cupcake mix – I sorted and filed and moved and tossed. I was on the last shelf when I yanked down a big, big box marked “ice cream social.” Huh? Two things: one, why do I have a huge box marked “ice cream social”? And two, I don’t even remember being the person who had time to appropriately label stuff in my pantry.

I opened the box, and inside was everything you need for the coolest kid party ever. There was a shake maker, snow-cone machine, cotton candy spinner and a cake pop baker. Long-handled spoons, ice cream bowls and a bright table cloth with ice cream cones printed on it. At the bottom of this box — the cherry on this surprise sundae — was a lime green pedestal that held six small bowls for ice cream toppings. Sitting in the middle of the spinning pedestal was a ceramic cupcake with a removable lid for hot fudge or caramel or strawberry sauce. It was summer and Pinterest and laughing children in one clever serving piece. It was darling.


I wanted to throw the darling cupcake as hard as I could against the wall.

Instead, I sat down next to the box called “ice cream social” and cried.

I remember this stuff. I bid on it at a silent auction years ago, back when ice cream socials and impromptu play dates and birthday parties had starring roles in my parenting plan. Back before I knew that my son’s meltdowns were not a phase and back when I thought he played by himself because he was shy. Back before I had any idea that I would not be a soccer mom but a special needs mom.

What I have here is a box full of plans for a kid I don’t have. Some days, like today, it makes me sad.

I was crying for my son, but I’ll admit I was also crying for me. Instead of six different ice cream toppings always on hand for my son’s friends, I have an endless supply of pens for his therapists. Instead of being the house that everyone comes to, we are the people that are never home. Instead of bike rides, we have speech therapy; instead of swim parties, we go to OT.

Do I begrudge this? Not ever. But is this what I planned? No. Every once in a while, not very often, but every once in a while, I give myself permission to grieve for the life I don’t have, to think about the mom I don’t get to be.

I wrapped up the cupcake and put it back in the box. One day. Maybe. In the meantime, the sweetest boy in the world was on his way home. As moms go, I think I’m doing OK. Ice cream socials are fun, but my son needs a mom with a backbone, some fight and a strong voice. I’ve got that.

But just so you know, I would have made an awesome soccer mom.


This post originally appeared on Sincerely, Becca.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.