I Used to Believe in Pet Rocks and That Plaid Pants Were the Best


When I was a little kid, I believed in a lot of things. I believed in magic, wonder, in the power of wishes and kisses, and that I – and all of us – have the power to change the world. I still believe.

Back then, though, I thought bad people only came in windowless white vans, that if you played a record backwards you could accidentally end up insane and that popcorn balls and apples received on Halloween had to be thrown away because of the danger of razor blades. I believed in Shawn Cassidy, too.

I believed in witches under the bed and in dolls coming to life while I slept (which is why, just in case, I always removed their heads at night and hid them from their bodies).

I believed that my parents’ love would last for always and that I’d never not know what all of my best friends forever were up to every hour.

I believed in being a pen pal and in letter writing, because long distance phone bills were much too expensive to be wasted on childhood gossip. I believed that I’d love the next door neighbor boy forever,and that when he moved away, I’d never have anybody understand me, ever again.

I believed that the bigger the stereo was, the better and that deep shag carpets and plaid pants were the best thing ever invented.

I believed that not having a basket on a bicycle was tragic and that Pooh raincoats would be a fashion statement that withstood the tests of time.

Plaid-pants-and-winnie-rain-coat(pp_w477_h443)

believed in pet rocks and that there would never be a day when kids didn’t leave the house in the morning, unheard from until it was time for dinner at 5:30.

I believed that grownups had the answers to everything.

I knew that phones were connected to the wall and that if you wanted privacy, stretching it around the corner of the kitchen divider wall next to the avocado green refrigerator was best. I believed in the ’70s, friends.

Today, I believe in raising awareness and empathy for special needs, in helping people to understand that the words “special needs” and “autism” are not scary or to be pitied. That life, with or without these words, is almost always worth it and, more often than not, when we can see it, beautiful.

I believe my little boy when he knows best about needing to hold my hand while he falls asleep, that it is true that chasing bad dreams away before he falls asleep works, and that I am the best “play with me” friend he has. I believe that he will be fine, after I’m gone, because not believing in that isn’t an alternative.

I believe in you guys and that you will accept my little boy, just as he is.

I believe there will be a warm and safe place for him, always. That you and your children will welcome him and will be patient with him when he needs a few moments to gather the courage to speak and when he needs a few more to say what he needs to say — and maybe, he’ll need to take a few times to do so for you to understand.

I believe in the magic of my youth and those carefree days before cell phones, laptops, social media and GPS.

I also believe in now.

In the power of social media (have you heard that the ALS Ice Bucket Challenge has collected $41.8 million since the end of July? Stay tuned because I have an idea for a social media trend to raise awareness for children whose words become broken.).

I believe that I can still change the world.

That all of us can.

I believe in tonight and in all of the tomorrows.

This post originally appeared on Finding Ninee.

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.

RELATED VIDEOS

Justin Timberlake Interrupts Concert to Sing ‘Happy Birthday’ to Fan With Autism


When the parents of an 8-year-old boy with autism learned that he wanted to go see a Justin Timberlake concert for his birthday, they had no idea that JT would give their son the best surprise he could have imagined.

Earlier this week, during the show in San Jose, California, Timberlake asked the whole crowd to join him in singing “Happy Birthday” to Julian.

In a blog post describing the moment, Julian’s mom, Marika Rosenthal Delan, wrote that she was concerned about bringing a young boy — especially one with autism — to an adult concert. She said she was worried about her son’s “obsessions, his volume, his repetitiveness, his clumsiness, if he would spill someone’s drink and if they would be unkind to him.”

Her fears were put to rest when the girls sitting in front of them, whom she thought Julian had been annoying the most by constantly kicking their chairs and yelling loudly, got the singer’s attention and kindly urged him to give the boy the birthday gift of his life.

The touching moment can be seen in the video below, which the family posted to Facebook.

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.

Epilepsy, You Picked the Wrong Dad


Liv_Dad

A long time ago, I made a promise to Livy that I would always be there for her. I have kept that promise. Now it is time to take it one step further. It is not enough to just be there for her, something must be done. Lemonade for Livy was inspired by Livy and her amazing spirit. Its foundation is built on a sister’s love and a mother’s devotion. It is also based on my promise. Lemonade for Livy is fulfilling that promise by bringing people together from across the country to be a part of something meaningful, to create epilepsy awareness and to raise funding for research so that a cure can be discovered. If you have not yet registered your stand or party, I encourage you to do so. And please share with others so that we can spread epilepsy awareness.

This is the first time I have written about the promise I made to Livy years ago and what it means to me. Livy’s epilepsy has changed me. And now it is time to fight back.

A Father’s Promise

Livy, from birth I have watched you.
Stiffening, shaking.

Everything new.
I am scared.
What do I do?
I am not ready.
I look in the mirror, eyes glossed.
Tears, I wish they were happy.
Why, why is this happening?
Spirit crushed.
I am lost.
Doctors, EEGs, surgeries, shunts, oxygen machines, hospitals, medicine pumps.
Beeping, would someone please stop the beeping?
I hold my breath when you do.
When will it stop, when will the seizure stop?
Ashen, you are ashen.
Finally, it breaks.
You are back.
Where did you go?
Do you know?
Do you know what happened?

Time is stolen.
Tick-tock, lives torn apart
10 seconds, 10 minutes, 10 hours, 10 days, 10 weeks.
Stolen.

But look at you, Livy.
You amaze me.
Your smile. Your gorgeous, beautiful smile.
You light the room, you light my life.
I know you are back when you smile.
It is your signal that all is clear.
The monster is gone.
For now.
Back to the closet, under the bed.
Hiding, lurking in the shadows.

Epilepsy, you are the nightmare.
You terrorize our children.
Waiting, always waiting.
Constant vigilance.
I know every move you make.
I thought…
Did you see her flinch? Is that a new twitch?
Changing, morphing.
Always one step ahead.
But someday, somewhere, I will catch you.
You think you are free.
Turning lives upside down.
Striking whenever you please.
No more. No longer.

I was afraid.
I saw eyes that were not Livy’s, quivering, bouncing.
That look. It was not her. It was you.
Now I see through the fog.
I am emboldened.
The fear I once felt, tucked down deep
Now burning, boiling, a yearning to do more.

Epilepsy, you picked the wrong dad.

I did not ask for this.
But I accept it.
I accept your challenge.
You give me purpose.
Was that your intent?
I do not think so.
You may have her now, but I am coming for you.
You have stolen from me.
My daughter’s innocence.
A life of peace.

I will not give up.
I will not relent,
I will never give in.
You have awoken me, a passion I never knew.
As long as I am here, I will fight you.

Yet you are a coward, you attack our youngest and most at risk.
No matter sick, hurt, asleep in their beds.

At night I check, chest rising, skin warm,
What would I do if she took her last breath?
It happens, the ultimate price.
I have read stories, so many stories.
The pain, the anguish.
I hurt for them.
I am angry.

You made me.
I am your enemy.

I am not alone anymore.
I will gather determined mothers, fathers, sisters and brothers.
Warriors in your throws aching to break free.
You have no idea what you started.

Think Livy is your victim?
You are wrong, very wrong.
She is a Hero, my Hero, with the power to inspire and give hope.
She is stronger than you could ever dream.

You used to make me cower, retreat.
But now I am emboldened.
The scars burn and I remember.
Oh do I remember.
Livy bears her scars, physical, emotional.
What you have done to her.
Her little body.
You broke her so many times.
My God, what I have witnessed.
My heart and soul are changed.

But you will not beat me.
I will chase you and never stop.
Wherever you are, I will be there.
You have found refuge in the shadows.
But no longer.
I will bring you to the light and show your true colors.
My color is purple through and through.

If our Warriors falter, I will be there to lift them up.
To tell their stories.

This is your last warning, Epilepsy.
I am here to make my stand against you.
I made a promise to my daughter.

This post originally appeared on Livy’s Hope.

Meet more Mighty dads. Like us on Facebook.

Captivating Photo Series Shows What Autism Looks Like Around the World


In the last two years, Debbie Rasiel has traveled through six countries to photograph families affected by autism. She’s met children across the spectrum — some don’t talk; some have physical, maybe even violent, outbursts. She’s met their parents and siblings, too — with a translator, she’s spoken to many of them. She’s watched and learned about different types of therapies available in countries like Mexico, Iceland and Indonesia. She’s experienced differences in culture and language, in weather and in class.

“The thing is, it’s always so similar,” Rasiel, 53, told The Mighty. “At the end of the day, even with the cultural differences, it’s the same. It’s a mother who is worried about her child’s future. It’s a special needs family. It’s autism.”

The New York City-based photographer calls her two-year endeavor, “Picturing Autism.” This past May, it debuted at SOHO20 Chelsea Gallery, but the project is ongoing — Rasiel is currently planning a trip to Vietnam. With the help of autism Facebook groups and the Global Autism Project, she’s found ways to connect with families from all over the world.

She’s comfortable photographing autism because she’s familiar with the disorder; her 23-year-old son, Lee, is on the spectrum. So when she talks to families, she’s talking as an artist and photographer, of course, but she’s also speaking as a mother.

“I’m not rattled,” Rasiel told The Mighty. “I’ve seen it all.”

When someone affected by autism, either directly or through a loved one, sees her photos, she hopes, above all, they feel less alone.

“[Autism] is in every country. It’s a global village we’re in. It’s everywhere. No one is alone,” Raisel said. “You’re a part of something larger.”

Take a look at “Picturing Autism” below and view the full series here.

Queens, New York

QueensBlog12

Cuzco, Peru

L1002279ab1

Oaxaca, Mexico

DSC67311

Lima, Peru

DSC87811

East Harlem, New York

DSC1906a1

Reykjavick, Iceland

DSC677021

Hveragerði, Arnessysla, Iceland

DSC6413bw11

Jakarta, Indonesia

JakartaBlog21

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.

Woman Sheds Her Clothes and Insecurities to Show What’s Truly Underneath


Jillian Mercado doesn’t mind when she gets attention. Especially when it’s for her style.

“I’m here, I’m present,” the model and editor says in the video below. “This is me, deal with it.”

Mercado, who was born with muscular dystrophy, shakes her head at the notion that someone with a disability cannot be fashionable. She thrives in her clothes — and she doesn’t use them to hide her insecurities anymore. That’s why she became a model — most recently for Nordstrom. And that’s why she participated in the video below — an interview for the “What’s Underneath Project,” where she sheds an article of clothing after answering each question.

“I think I woke up and was like, ‘I’m so over this. I’m not going to sit in a corner all my life just crying about something that I really can’t change,” Mercado recalls when asked about turning her struggles into strengths. By the video’s end, she sits, smiling and confident, in her underwear.

Then she says this:

“If you’re different, that’s sunlight in somebody’s world.”

Watch her full interview here:

h/t Upworthy

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.

 

I’m Just an Ordinary Mom in Extraordinary Circumstances


There has been a few videos in the past few months about my daughter, Pip, Happy Soul Project and my little family that I honestly can’t watch without shedding a few. Awhile back this tear-jerker from Station 14 Kingston came out, and then, well, there possibly will never be anything in my life again like the Indie88 Billboard reveal video:

I adore that my family gets to have these keepsakes, if you will… these moments in our lives captured so beautifully to remember, be proud of and have a good cry at.

But I wanted to address one small thing in all of this…

Since all this media attention, be it videos or articles, I’m constantly getting messages about what an amazing momma I am. And while it’s always nice to hear and really lifts me up, I want it noted that I am indeed just a ordinary, everyday momma. It’s just, in my case, I am in extraordinary circumstances in which the very best of me is being being showcased.

These videos, news articles, even my own pictures or blog posts, show me kissing my babies, laughing and dancing, fighting for advocacy and awareness. It doesn’t show me yelling, “Dammit!” after my toddler son refuses to eat the eggs he just demanded I make or my eyes having their own pulse because I am so bloody tired. It doesn’t show me crying in my minivan when Pip has a discouraging appointment or sobbing in my pillow when I find out another babe with Down syndrome didn’t make it. It doesn’t show me texting my girlfriends when I’ve spent hours trying to get Noal or as I refer to him “my demon” to bed, frustrated as all hell. It doesn’t show me in my pajamas having a day filled with Dora and Franklin because just the thought of lugging all of us out is beyond exhausting. And it certainly doesn’t show me making beans and toast again for dinner or stepping on yet another dinky car while swearing & throwing it, marking up the wall.

It shows the best of me — or so I like to think.

Take yesterday… Pip and I were on Cityline (Hello amazing!!!), and what you saw was a momma who loved her daughter and was fighting the fight to spread #differentisbeautiful a little further.

jul2-pip

jul2showguide

And while that is the case, what you didn’t see was:

  • I got lost and missed my exit coming into Toronto — I drove around downtown in traffic for two extra hours with Pip losing it, me needing to pee like it was my job and swerving my big momma van to avoid you fearless Toronto bikers.
  • I stayed up too late with my cousin drinking too much wine and scarfing down the most garlic of all garlic-tzatziki sauces as if I didn’t have an uber important TV interview in the morning.
  • I was up four times with Pip from 1 to 6 a.m. and was at my wit’s end about to lose it from lack of sleep, a teething baby and nervousness at the day ahead when she woke me up with this:


  • My hair started out curly — then Toronto humidity beat it down, and I was worried it was going to get all big and bad for the interview. Instead of thinking about what I was going to say or what questions I might be asked, I was wondering how I was going to manage the frizz.
  • I waited in a parking lot outside Cityline for almost 45 minutes begging Pip to sleep because it was gonna be prime nap time when we were supposed to be filming. No such luck, which in turn caused hair pulling and glasses rip-offs live on air.

cl5

cl6

cl11

  • I chatted with my husband numerous times before I walked in because he somehow in his straight-forward-way calms me the heck down.
  • When we had the Today’s Parent shoot, I desperately wanted them to do my makeup but they said I looked fine. This time I was making sure it happened, and I looked a bit “rougher” coming in, blame the wine or the baby up all night. Either way I wanted to see what I could/would look like done up by a professional.
  • Not only did the makeup artist have to work around and with Pip in my lap reaching for her brushes, but she had to endure my still rancid tzatziki breath — so sorry about that.

10350417_830002367010651_8562513178346088259_n

  • They had trouble getting the microphone in my dress because it was so bloody tight – that’s a whole other blog in itself… I mean what does one wear on TV? We all know I struck out big time live with the Huffington Post. So you’d think I’d learn to step it up a notch, but no — went big with an Old Navy Dress and Ardene’s belt.
  • One of the first things I did when I sat in the chair to be interviewed was nervously ask if the mug full of water was “for real” and could I have it so that I felt like I was on a “real talk show” — I’m seriously such a twonk. The audience laughed and they played along with me but who knows what they thought when I announced and then stole the mug as a souvenir.

wfw

  • Everything happens so fast — one minute you are watching the show in the greenroom, next you are watching a few steps away and then wham — you’re in the chair and the camera is on. And the whole time I was wondering, how the heck are my legs supposed to be in this scenario? I looked over and the lovely Sasha, Editor-in-Chief of Today’s Parent had her legs crossed all lady like, but I had Pip on my lap, so quickly made the decision to cross at the ankle. Bad call, but y’all gotta realize that was honestly what was going through my head.

cl3

  • But then the questions started and, not knowing it at the time, but reflecting back after watching it a mere 32 times, I talk too much with my heart and way too much with my hands.
  • Add the granola bar I gave Pip and called lunch on the way home and trying to change out of my too-tight dress in a busy parking lot and there you have it…

You see, I’m just an ordinary, everyday mom being showcased by all the best points…

Don’t get me wrong, I do really think I am an awesome momma to my two little hooligans… most days.

But I have to state — I think we all are — Being a momma is beyond anything I imagined. The happiest, the hardest and the most humbling experience by far in life.

But it’s us everyday mommas that are so awesome — It’s that momma I saw the other day who had a baby and was entertaining a busy toddler. It’s that momma who has twins and is determine to breastfeed them both. It’s that momma who just knows something is wrong and fights and pushes for her babe. It’s that momma who makes homemade muffins and baby food or who, like me, lives off those squeeze packs. It’s that momma who volunteers at school, takes on play dates or goes to a job and works her arse off. It’s that momma who, at the end of the day, kisses her sweet babes and thinks to herself, “I love you, I love us but tomorrow I am going to be an even better momma.”

Being a momma is what is amazing and inspiring. And I just happen to get this awesome opportunity to show others how I do it.

So, truly thank you for all the kind and uplifting comments, messages and words — Right back at ya though, mommas, right back at ya.

This post originally appeared on Happy Soul Project.

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.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.