Autism From Our Dog's Point of View

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Allow me to introduce myself. My name is Wolfie.

I am half Bichon and half Shih-Tzu, also known as a Teddy Bear Dog or a Zuchon. I am sixteen and a half pounds and I barely stand a foot off the floor, but do not let my size fool you. I may be small, but I am mighty.

I’ve been with my family for five months now. Everyone keeps saying the Easter Bunny brought me as a surprise.

But I remember the two biggest people in the family—the mom and the dad people—came to pick me up in a conference center off the highway in a small town called Portsmouth. We drove around for hours and then snuck home because they said the kids were finally asleep. I never did see a bunny.

For the first two weeks I was home, I tried this strategy:

Pee on couch. Look adorable.

Poop on rug. Appear irresistible.

Pee on floor. Tilt head to one side with cutest expression possible.

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This went on for a while until the dad guy said I was on something called “thin ice” and I’d better get house trained soon. He had just stepped in one of my puddles wearing only his socks.

He pretends he doesn’t like me, this dad. But I’m not fooled by him. When it’s late at night and all the small people have gone to bed and the mom is upstairs reading, he sits on the big red couch, and he calls to me in a quiet voice.

“Wolf, come on boy, come sit with me.”

I sit next to him and we watch shows that the mom doesn’t like — baseball and politics and something weird called “The First 48.” But I can tell by the absentminded way he rubs my foot that he’s only half-listening to the television. Instead he’s thinking about his patients and his children and tax returns and healthcare and insurance.

There are a lot of people in this house. Seven. Two big people and five kids. One time a man came and delivered some food in a brown paper bag that smelled delicious. When he stepped into the kitchen and saw all the kids at the counter, he asked if we were having a birthday party.

The round boy laughed and shouted, “Yes!  It my birthday! Let’s sing HAPPY BIRTHDAY TO ME! Happy birthday to me!” until the mom said, “Okay, Henry, we heard you. Eat your egg roll.”

This Henry boy is the smallest, but he isn’t too small. Life is very, very exciting for him, and he is very loud about it allHe fills up every room with his chatter and his laughter and his drawings, and he is squishy and delicious and curious and smart. He is so alive, you can almost see his heart beating through his favorite Batman shirt.

There are all these boys and only one little girl. When you look at her you just think about the color pink. She is sweetness and light and airy and calm, like the most delicate wafer cookie you hold on your tongue until it melts.

But she works very hard. She is the first one awake to take me out in the morning, even before I ask, and all day long she is trying to do things for other people — pack their snacks or sweep the floor or straighten the playroom.

Her mother worries, and the dad guy hopes if he tells her how beautiful and smart and sweet she is, she will believe it forever and never listen if someone accuses her of being fat or ugly or stupid or worthless.

I’m not worried, because this pink girl is so very strong.

There is a very big boy, a boy who stands taller than the mom’s shoulder. He wears glasses. They call him a “tween” sometimes, and I don’t know what that means but it seems to annoy him.

He and the mom can really get each other going laughing. They both like the same jokes. But there is a strain that I don’t think was there before. It feels new.

It feels like the beginning of something and the end of something all at the same time. He is starting to cleave from them, to long for video games and something called an “iPhone” and movies that are PG-13. The mom, she knows this, and her heart is aching to make the most of the time she has left, before this tween will pack up his glasses and his gym shorts and his Nook and drive down the driveway to a faraway place called “college.”

I may be very close to the floor, but I see it all.

There’s another big boy, just about as tall as the first boy. He also wears glasses. From behind they look like the same boy and sometimes people mix them up, but I never do.

From what I understand, I was supposed to help this boy. He has something called “autism” and he was very, very afraid of dogs, even little ones like me.

When the mom first brought me in from the garage where I was hiding and trying to stay very, very quiet, all of the kids squealed and laughed and clapped their hands. But he didn’t. His face was all twisted up and his voice was very loud and angry-sounding.

“I DO NOT like dogs. You have ruined my life. With this dog.”

I don’t know anything about autism or how to help people who have it. So I just did the only thing I knew how: I waited. I waited and waited and one afternoon when no one was watching he crept over to where I was lying on the couch. With one finger he stroked my paw.

“You are. Soft.”

This boy gets very, very mad. One day over the summer his temper rose until it felt like the sun was shining inside the house, the rays too hot to touch. He was screaming and hitting his head over and over again.

“No para! I will not have a PARA!”

I did not know what a para is, but the mom seemed to because she kept talking softly, telling him to take a deep breath and calm down; they would talk about it.

He came for her then. With his fists curled into the tightest balls he charged her wordlessly. She grabbed his wrists and held them with her long fingers and said, “Enough Jack,” so sharply her voice was like a knife cutting through the hot, still room.

He dropped his arms to his sides, and the only sound was his whimpering, “no para no para, no para.” I barked once, twice, my voice not as sharp as hers — more like an ice cube clattering into a smooth glass.

He fell to his knees next to me and buried his fingers into the fur around my neck, where it’s longest and deepest. Through his fingertips, I understood. I knew. Somehow, because of this strange thing called a para, the boy felt different. He felt worried and alone and disappointed.

He felt less.

There is another boy. He looks just like the dad, with dark hair and deep brown eyes that make you think of chocolate. He is all fun, this one.

But every once in a while a shadow crosses his face, and his eyes get cloudy, like the rain is coming. That’s when I know he needs a little extra cuddle, and I just turn on my back so he can rub my soft, white belly. He rubs it until the sun shines again.

“Come on, Wolfie, run outside with me!”

A couple of weeks ago, the big yellow bus started coming around again. We all walked down to the bus stop and everyone was so excited.  But when the kids got on and the bus pulled away, the mom put her head on the dad guy’s shoulder and said, “Oh, Joe.”

Slowly the three of us walked back up the driveway. They looked down and started talking to me in a funny voice with funny words. “You a wittle doggy, wight?  Just a wittle pup-pup.”  I felt confused.

Then I understood. Their babies were gone. Now I was the baby.

boy playing outside with a dog Last weekend we all went to a big field to play with a black and white ball. The mom and dad kicked it around with the kids, but the second boy said he only wanted to hold my leash and run with me.

So we did. We ran and ran through the fields together. And with each big step he took I could tell, for the moment, he was free. Free of the shame and rage and confusion and panic that follow him around all day like uninvited guests.

Running by my side  through the rich green grass, he wasn’t a child with autism or a fifth grader with a para or a brother who is not like the rest.

He was, quite simply, just a boy and his dog.

This post originally appeared on CarrieCariello.com.

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A Letter to JetBlue From the Mom of a Child With Autism

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Dear JetBlue Airlines,

I am writing this post to thank you.

My son is on the autism spectrum and, because of the custody arrangement between his father and me, we fly 7 to 9 times a year out of sheer necessity. Flying, with all of its loud announcements and crowded waiting areas and unusual smells, is quite frankly torture for him. He has acute sensory processing issues that affect us even in simple everyday situations, so you can imagine how complicated airports and airplanes are for us.

In the past, we have flown other airlines. It has not gone well. As my son was literally banging his head on the wall in the boarding area, I once had the gate agent question why I was asking for early boarding for a child clearly over 5. When I explained that the constant boarding announcements and large crowd were extremely difficult for us, she allowed me to board early but finished her interaction with me saying, “Just this once,” as if I were getting away with something.

(Incidentally, this occurred after I had already called the airline a week before to request this special service. After being put on hold and then transferred, I was told to just speak to the gate agent and it wouldn’t be a problem.)

Unfortunately, this has been the case with every airline we have flown… except with JetBlue.

I needed to fly my son home yesterday. I went online and determined that if we used an airport a bit further from our home, we would be able to try JetBlue.

I was immediately impressed that the JetBlue online booking system allowed me to include information about his special needs when I booked the ticket.

So simple. No expectation of calling and being put on hold. No extra requirements. No having to educate a phone representative about autism and sensory issues. Nope, I just checked a box and included a few comments.

That alone was worth the extra drive time to the airport with JetBlue.

I called ahead of time anyway (maybe because I just couldn’t believe it would be so easy). I spoke with a sweet, friendly phone rep who not only moved our seats to the middle of the plane when she heard the smells of the bathrooms are tough for my son, but she also informed me that she placed a note for “silent boarding” in our reservation. She told me that before a single announcement was made, the gate agent would come and personally escort us to the gate for essentially pre-preboarding.

No announcements. No huge line of harried travelers. No head banging before we even get on the plane.

When I hung up the phone, I was in relieved, grateful tears.

When we got to the airport yesterday and checked in, the agent asked if we would like a meet-and-assist to get through security more easily. I was floored.

I declined, because I know how busy your employees are, and my son really only requires assistance when it comes to the boarding area. We may not have used the service, but I was totally impressed by the offer.

Just before boarding,the gate agent sweetly escorted us to the gate as promised. We boarded the plane before anyone else and had my son’s headphones on before the noise and craziness of boarding the plane began.

Throughout the flight, your attendants also went out of their way to be understanding and kind. It was obvious they had been informed of the information in our reservation and were so gracious in ensuring my son was comfortable.

When he started to meltdown because he wanted a different drink than what was on the menu, the attendant told him he would wait as long as necessary for him to make another decision – no rush. My son calmed down, smiled and ordered a ginger ale.

It was exactly what he needed.

So, thank you.

Thank you from an already overwhelmed, tired, fighting-for-her-son-every-day-of-her-life momma.

Thank you on behalf of an 11-year-old boy who struggles to cope in a world that just doesn’t understand or easily accommodate him.

Thank you from a now lifetime JetBlue customer.

With much respect and gratitude,

Shawna

(Dear Readers – Please know, I wrote this out of sheer gratitude. This is in no way an advertisement for JetBlue nor was I compensated in any way for this post. I do think you should fly them – every single time you fly. But that’s just my opinion based on my own experience described above.)

This post originally appeared on Not the Former Things.

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Charles Cotugno and Carrie Anciaux Take Powerful Photographs for 'Stories of Autism" Photo Series

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One woman is using the power of photography to give families affected by autism a much-needed sense of community.

In 2005, photographer Charles Cotugno started a small portrait project called “Stories of Autism.” In 2009, it became an official nonprofit organization, and in 2011, photographer Carrie Anciaux took the project to the next level.

In her three years with the project, she’s photographed 40 subjects. Each portrait includes a place for subjects’ families to write their story on Anciaux’s blog.

 “A few words that define Wiley are: awesome big brother, lover of Thomas the Train, considerate, smart, and excitable. One word that does not define him: autism.”
— Shelly, Wiley’s mother

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“We have learned to celebrate the small moments of parenting.”
— Sarah and Jack, Lyla’s parents

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Anciaux is a speech and language pathologist who took a few years off to do photography full-time.

“I found [‘Stories of Autism’] online by accident,” she told The Mighty in a phone interview. “I thought it was great for me because it combined my two interests, photography and working with people with special needs.”

Although Anciaux doesn’t have a child with autism, she says she can’t help but recognize the impact her work has on families that do.

“I’ve noticed mostly that this project gives families a voice — a chance to explain to the world how autism affects their lives, daily,” Anciaux told The Sun Prairie Star. “I know some families hope that, by writing their story, it may increase tolerance in the community for people who are different than them.”

On Aug. 2, Anciaux organized the second annual picnic for the “Stories of Autism” subjects at her home in Sun Prairie, Wisconsin. About 75 people got together to engage in a bevy of autism-friendly activities like pony rides, a bouncy house and face painting, according The Star. The event ended with everyone releasing butterflies to symbolize the spread of autism acceptance.

“[The project] is much bigger than me,” Anciaux told The Mighty. “I’m just trying to take it to the next level.”

She continues to seek subjects with autism for her blog to spread awareness and give families an outlet to express the powerful emotions they experience every day.

“This has been great for myself too. I like meeting nice families who deal with these challenges every day,” Anciaux said. “I find that most stories have a theme which is ‘gratitude.’ The small moments in the day when it’s kind of successful and something to celebrate. I think that’s taught me a lot too as a mom.”

You can view more of Anciaux photos below and on her blog.

“If you have a disability, you might have an enhanced ability that hasn’t been disabled.”
— Morton Jr.

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“He emotes without a filter. He loves deeply. He trusts wholeheartedly. He is not bashful, meek or timid. He is himself 100 percent of the time.”
— Sarah and Jesse, Aaron’s parents

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“We think the sky’s the limit for our boys.”
— Kate, Jack’s mom

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“Be the best advocate for your child as you can be.”
— Angie, Brody’s mom

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All photos courtesy of Carrie Anciaux Photography.

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The Moment I Saw Through the Eyes of My Son With Autism

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We recently went to visit a family friend (Uncle M.) at his apartment. This particular friend became blind as a baby and wears sunglasses and uses a walking cane. In the 20+ years I have known him, I don’t remember him ever once complaining about it or feeling sorry for himself. In fact, he is one of the most independent men I have ever met! He is the sweetest man ever and the hubby and I think of him as a brother and the kids think of him as an uncle. Uncle M. has owned his own place for over 20 years, has a full-time job in Washington, D.C. (he takes the subway), has tons of friends, a girlfriend and can play the drums (he played at our wedding).

Anyways, Dominic made himself at home and started running around in the apartment. We were telling him to stop, but it wasn’t until Uncle M. told him, Be careful, buddy!” that he actually did. Since we were visiting around dinner time, we were debating whether to go out or order carry-out. We opted to go out for dinner at a favorite pizza place nearby. Dominic and Uncle M. sat next to each other at the table, and I was sitting across from them. I was a little concerned, because I usually sit right next to Dominic to make him feel comfortable and to kind of keep him “in line.” We really didn’t need to be concerned or worried. Throughout the meal, Dominic snuggled up next to Uncle M. multiple times. They both were definitely enjoying the yummy pizza. When we went back to drop off Uncle M. at his apartment, since it was late, we decided to say our goodbyes in the parking lot. When Dominic gathered us all in for a “group hug” and started singing, “I love you, you love me” from “Barney,” I felt like I needed a tissue.

Uncle M. doesn’t “see” Dominic as a child with an Autism Spectrum Disorder, and Dominic doesn’t “see” Uncle M. as a man who is blind. I think often about what it must be like to see the world through Dominic’s “eyes.” I know one thing — Dominic can immediately pick up on how comfortable someone is around him. I’m guessing Uncle M. can too. I wonder how many people have judged him, solely based on the fact that he is blind. I thought it was super duper awesome when we went to the restaurant to eat pizza and not one person stared at him (or Dominic).  Sadly, though, many in our society “see” the special needs first and then the person.

Wouldn’t it be awesome if it was the other way around?

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This post originally appeared on bountifulplate.

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My Son Has Autism. This Is Why I'm Lucky.

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I will be the first to admit this is not the life I thought I would have. I mean, come on. Who signs up for it? Even teachers, therapists and other professionals that work with our kids clock out at the end of a shift. Hell, half the reason I left the field after the kiddo was born was because autism was burning me out. HA! Autism Mafia was like, “Oh no, girl.  Just when you think you’re done with us, we pull you back in.”

So yeah, some days are less than ideal. I might not always show it online but trust me I am far from an Autism Pollyanna. However despite the sleep, food and behavioral issues, I’m pretty lucky. No really. Let me break this down for you.

I’m lucky it’s 2014. We know so much more now — way more than even a generation before us did. My kiddo wouldn’t even be in my town’s school district had this been like it was when I was his age. More likely I would of been encouraged/pushed into sending him away to some facility where visits would be rare if at all. And the care? Let’s not even think about that. As much as I joke from time to time that the kiddo is available for rent (two night minimum) or that a band of kidnappers would probably return him after having him for a day, I really can’t even wrap my head around this idea of him not living here.

I’m lucky for the Internet. Again, this goes with the 2014 thing, but when it’s 1 a.m. and I can’t sleep because I am too busy having insomnia over my kiddo or he has decided it’s a sleep-optional night, another autism parent is up somewhere in the world. Or there are blogs to read. Or good quality crap TV to watch online. The computer can be my lifeline and my mindless entertainment. I can just lurk or pour my heart out onto the page like I am now. Thank God for blogging. I think I’m slightly less annoying to my family because I have somewhere to get this all out. Or at least they see other people, say, “ME TOO!” and realize I’m not just making this stuff up. I have seen a difference in them. Maybe they’re just afraid I’ll put them in the blog. I wield that like a sword then. I can make ya a hero or a villain folks!

I’m lucky I have a husband that stayed around. So many do not. So many bail. Not him. He gets tired. He is never sure what kind of scene he’s going to walk in on when he comes home from work. (I suspect he checks in on Facebook before he heads home for the night. I would.) Even when he’s off work, he’s just on another shift at another job. This boss is far more demanding, the hours suck and this daddying job won’t even match a 401K. He’s here doing it with me though. At least I have a coworker I get along with and I can say, “WTF?” too. Plus, he’s kind of cute, and I’m allowed to sexually harass him. In fact, he encourages that.

I’m lucky my son’s school district does not suck. He’s been going since he was 3. Off the top of my head I can think of maybe three or four problems that needed addressing. He’s 10 now. That’s a pretty good record when I think about it. Before you get yourself in a twist thinking, “Oh, her kiddo must be much more high-functioning and needs less,” nope, you couldn’t be more wrong actually. I am very grateful we live where we live. We go without quite a bit in areas because being in this district means that much to us. Yes, we go into IEP meetings prepared but I’ve never left one enraged. We get to “a place of Yes,” I guess you could say.

I’m lucky because this could be more complicated. He could have several other health issues to boot. I know several families who are dealing with autism and “fill in the blank” medical challenge — seizures, heart problems, diabetes, vision and hearing loss. Again, he’s 10. ONE ER visit. Just the one. I know, right?  How the heck am I managing that? Knock wood, I haven’t a clue. I’m just lucky I guess.

I’m lucky because it has been worse and it got better. I’m lucky because I have gotten used to the way we live. I’m lucky because my pity parties for one don’t last as long as they used to back at the start of all this. I’m lucky because I can find the humor now and then in this.

I’m lucky because even when it’s a really crappy day I can go to a drive-thru window and get an order of fries and make my kiddo happy. Whoever said money doesn’t buy happiness clearly never saw the look on my son’s face when given a side of fries. Thank goodness it’s fries he loves. Foie gras would of been a much more expensive food to obsess on. Sure wouldn’t of worked as a blog title either.

This post originally appeared on Autism With a Side of Fries.

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Will You Help Me Show My Son He's Not Alone?

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Lately I’ve been really curious about what autism means to my 10-year old son, Jack.

I mean, I know he knows he has it. And we know he hates it. But what does it mean to him, exactly?

So, I conducted some high-level research. It went something like this:

“Jack, what does autism mean to you?”

(Ears covered, face screwed up.) “Stop TALKING about this to me.”

“But what do you think it means to have—”

NO MORE TALKING.”

So I had to go underground with my investigation, if you will. I had to resort to strictly observing him, examining and noting his reaction in certain situations and circumstances.

And as best as I can understand, Jack thinks autism means you earn things.

Let me give you an example. Last week I had to bring Jack for his eye appointment, which is another post entirely and something I’ll tell you all about it when I’ve fully recovered from the trauma of listening to Katy Perry for the whole ride and pupil dilation and “That man’s shirt looks dirty.”

The appointment was at 12:45. We needed an hour and 15 minutes to get there on time, which meant we needed to leave by 11:30. This left me plenty of time to take a 9:00 Crossfit class, go home, shower and pick Jack up from karate camp.

There was just one minor autism-related snafu: Jack remembered that the last time we went to his pediatric ophthalmologist appointment in Boston — on Tuesday, December 10th at 10:30 a.m., when the doctor wore a black dress and we were in the exam room with light blue walls, to be exact — he stayed home from school all day. And so now he wanted to stay home from karate camp, too.

This did not parse well with my plans for working out.

But see, I have experience with this kind of thing. I know what I’m doing. I’ve read all the books and done all the research about child rearing and autism and parenting, and so I did what every good mother would do in this situation. I reached for the bribe.

“Jack, if you go to karate camp first I will buy you Snow White on DVD.”

“The Disney Special Platinum Edition or the Two-Disc Extended Edition.”

“Uh, whichever one you want,” I told him, making a mental note to myself to limit his time on Amazon.

“NO! That is EARNING! I won’t EARN A DVD. People with autism earn things.”

You see? He has somehow gotten the idea that having autism means you have to earn things. It should be fun trying to convince him to get a job someday.

When we first started talking to Jack about his autism, we tried to explain it in terms he could understand. We told him his mind works differently and sometimes his body moves because of something called self stimulation.

Naturally, he had a lot of questions. He wondered if he could die from it and why he has it and if he’ll ever get rid of it. He also asked, “Who else. Has autism.”

We kind of skipped over that one.

Then one day last spring he came off the bus and said, “I am the only one. In my class with autism.” And that afternoon, it dawned on me: he feels alone in the spectrum world.

Sure, I can tell him all the about the statistics. I could sit him down and say, “Listen, Jack, one out of  68 kids are diagnosed now, so there are literally a bajillion people like you, people who picture Wednesday as orange and remember what the ophthalmologist wore six months ago.”

(And yes, bajillion is a real number. I researched it.)

“Henry. Henry has autism,” he announced one afternoon. We’d just finished picking blueberries, and I looked over at my 5-year old — who was trying to see if one of the round ripe fruit would fit in his nostril — and  back at Jack.

“I can see why you might think that,” I said slowly. “But he isn’t diagnosed with autism.”

“Who else. Who else has it.”

“Well, lots of people have autism, Jack.”

WHO.”

What do I say?  Of course I know other kids who have it, adults even. But it is not my place to open that dialogue.

So instead, I try to point out autism’s more savory qualities: his memory and his kindness, his determination and his progress. But it does little to abate the obvious loneliness, the isolation of being the only one in his family, in his class, maybe in the universe diagnosed with spectrum disorder.

It’s as though I’m telling him this:

Jack you are a brilliant unicorn amongst us ordinary horses. You are so beautiful! We know there are tons of you out there — bajillions, even— but we don’t know how to show you. We don’t know where they all are. Oh, and magical unicorn? We don’t really get you. We don’t understand you. We are blinded by your colorful beauty but your tantrums scare the crap out of us. In fact, maybe it would just be better if you were a plain old horse like the rest of us. Then we could figure out how to teach you fractions.”

All summer Jack’s been telling me he wants his autism to stay a secret when he starts fifth grade in the fall. He wants to keep it from the teachers and principal and students in middle school. As of yet, I have not had the heart — or the courage — to tell him they already know, that something called an IEP and paraprofessionals and a modified course load have been in the works for a while now.

I never had a concrete plan or vision when I started writing this blog. Mostly I did it because my publisher insisted I start one to promote the book.

But it’s been over two years now, and looking back I guess I also did it so I would feel less alone. From the safety of my little office I could share my heartache and make my jokes and connect through cyberspace with other people like me who are also balancing autism and parenthood and play dough and swimming lessons. And if there was a smidgen of autism awareness to the whole thing, well, that was just a bonus.

But ultimately, I have failed. I have failed because, while I feel connected to a wider community of people, the boy sitting in the room next to me — the boy with autism — feels confused and scared and ashamed.

He feels alone.

More than that, he wants to hide something that is as fundamental and essential to him as his beating heart or his thinking brain or the freckle on his right forearm. He wants to keep autism a secret.

I wish to somehow show him that there are, in fact, a bajillion more people like him in this world. That there are boys and girls and fathers and daughters who cover their ears during fireworks and squint against fluorescent lighting’s blinding glare. People who have IEPs and aides in the classroom and battle anxiety’s fierce snake.

I want to show him that many of those same people play beautiful music and have jobs to earn money and love to go to the movies and always eat ice cream after dinner.

They are, in essence, just like him.

And so readers, I was hoping you would help me show my son he’s not alone. I was hoping I could call on my own community in order to expand Jack’s solitary world.

Would you click here to go to my Facebook page, and add the name of someone you know with autism in the comment section below this post?

Share as much or as little as you like. Share the name and age and of your son or daughter or neighbor or student or brother or maybe even yourself. Share a picture if you feel comfortable. Tell us where you live if you like, or add a little something that makes this person special.

I can’t wait to see what a bajillion looks like. I’ll even go first.

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My son Jack has autism. He is 10. He is as magical as a unicorn.

This post originally appeared on CarrieCariello.com.

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