Kids With Autism Need More Than Our Awareness

Usually around this time of the year I complain about the endless winter in Canada, and I also dress in blue and I join the conversation about autism awareness.

Since 2007, April 2 has been dedicated to talking about autism, to educating the public about the reasons why many of our kids flap around when they get excited; laugh for no reason, or don’t laugh at all; don’t make eye contact or don’t answer to their name when they are called; repeat constantly the same song or TV show; and throw huge tantrums at the supermarket or scream uncontrollably under particular conditions.

april autism awareness blue

Two years ago, I joined this conversation looking for answers to my current circumstances, and I started to navigate a colorful spectrum of information, from other people’s stories and concerns to possible causes and strategies to support the development of children with autism. At this point, I don’t focus anymore on the causes; I already passed the stage of “why” to deal now with the “what” and the “how.”

It has been quite a journey! Like a rollercoaster ride that never stops, that makes me dizzy but at the same time makes me wish for more and more, because maybe, in the next lap, we are going to make it!

Many times I’ve felt that my life can be divided in two. But I now realize that if this is true, and if there exists a point in my life that cut it in half, it could be when I started to live in the autism spectrum. I say “I started to live in” because, even though I am not the one who has autism, my life and the way I see the world had changed tremendously.

When the doctor confirmed the autism diagnosis for our son, Alejandro, I felt devastated. It was a very difficult time full of frustration and deep sadness. The confirmation of his diagnosis was something scary, and it made me feel really sad and hopeless. At that time, I thought autism was an incurable illness that was going to live with my son forever, and that was going to make his life (our life) very difficult.

More than two years later, things have changed a lot! Alejandro is still nonverbal, but he is learning to communicate in so many ways. He is looking at me and sometimes playing with me, and that encourages me every day.

I still feel anxious and overwhelmed, but I’m also stronger than I was two years ago, and autism doesn’t scare me anymore! I admit that I get mad at it sometimes, that some days are so difficult that I just want to leave and never come back, but other days are better.

When I can connect with Alejandro and I see his smile, I can easily understand that it is just a matter of coloring one day at a time: listening to my son’s own music and forgetting about conventional milestones; learning to be patient, or pushing when needed and celebrating his efforts and progress; promoting awareness with inclusion and, obviously, taking some mama time to enjoy a glass of wine on Friday nights to recharge.

As April starts, I’m complaining again about the endless winter in Canada (looks like spring isn’t coming this year), I’m wearing blue, and I’m joining the conversation about autism. But this time, I am not limiting it just to awareness.

Being aware is not enough; we need acceptance. Autism is not a choice for our kids, but we can choose to understand them and promote inclusion for all the people who live in the spectrum. Our children need love and appropriate resources; waiting lists for treatment are ridiculously long and private services are way too expensive for average families.

Our children need to be invited to birthday parties and play dates; they need to have friends. They have feelings and celebrate love and friendship, just like you and me. How are they going to improve their social skills, if they are not given the opportunity to socialize?

Our youth need to build confidence, and have access to opportunities to learn skills toward a successful job and a bright future. Our adults need fair salaries and ways to be heard. Autism’s parents need a friendly hand, not a judgmental stare or a comment like, “But he looks normal,” or “At least is not cancer.” (Believe me, it isn’t nice and doesn’t help at all.)

Sometimes I think that life presented to me this colorful spectrum to teach me that I need to slow down and really appreciate the music of people and the colors of the world around me… to be more humane.

Explore with us, and learn to see beyond the spectrum…

A longer version of this post originally appeared on One + One = Four.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why He’s Asking Strangers on the Street About Helmets

To the kids (and adults) without helmets:

Going for a bike ride? Headed to the skate park? Jumping on the back of a Harley? Think twice, my friends, no matter how old or young, or big or small you are. I’m here to share with you a personal story, one that will hopefully inspire you to put on that helmet before you go on your next ride.

I’m a religion teacher at a church near my home in Munster, Indiana, and at this church is where I met a little boy named Cody, and his big sister, Korey. At the time, both the kids were very young, and it was one of my first years teaching. I could tell from the moment I met these two adorable kids, they were going to go places and do things in life.

What I didn’t know is that it would take a massive catastrophe for their new journey to begin.

One night, early in June of 2014, Cody and his dad were out for a bike ride near a skate park in their home town. Cody decided he wanted to try going (slowly) down a small ramp. First few seconds: fine. Next: boom. Cody’s front tire on his bicycle had slipped off the ramp, and Cody toppled over. He wasn’t in much pain, but his mom ran to check on him anyways, because he suffered from asthma. Then, into the car, and to the nearest urgent care center they went, just to be sure nothing was wrong.

Sure enough, as the doctors looked Cody over, they noticed several fractures in his neck, back, and ribs, and one rather major fracture in his skull. Cody wasn’t in much pain at the time, but the next thing the family heard took the wind from their sails. Cody needed brain surgery, as he had suffered from a Traumatic Brain Injury (TBI). Over the next six days Cody stayed at their local hospital receiving the care and attention he so desperately needed.

All of this, just because he wasn’t wearing a helmet? Yes. All of this.

Word of Cody’s injury spread quickly throughout the area by way of mouth, and of course, Facebook. Soon after the accident, the family started two Facebook pages: Cody’s Medical Updates and Helmets for Cody. (Please visit the second Facebook page to learn more about the accident.)

The next thing on Cody’s to-do list will warm your heart.

After all of the surgeries, hospital stays and pain complications, Cody wanted to help others. His goal was to make sure that no other child, nor adult, for that matter, would have to go through all of the terrible things he did. He started approaching strangers, people on the streets, and sharing his story, and asking people to wear helmets to protect themselves from these types of dangerous incidents.

I’ve now taken it upon myself to help spread awareness for TBIs and Cody’s story.

I’m sure he’d love to see some new photos of people wearing their helmets because they heard about his story, and want to make a difference, on his Facebook page, Helmets for Cody.

He’s a 9-year-old boy making a big impact on the world. The least we could do is help brighten his smile, and put hope in his heart, so that kids in the future won’t go through all that he did.

If you, or a loved one you know, do not have a helmet, and plan to ride anything other than a car in the near future, PLEASE get a helmet, and wear it. It could very well save your life.

Post your photos to Facebook with the hashtag: #HelmetsForCody and tell them Katie sent you! It would mean so much to me, and even more to my little friend Cody, and his family, if you would do this for us!

Thank you, and remember to wear your green next March to show your support for TBI research and brain injury awareness!

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When My Service Dog Realized I Was Crying

Emily Grad One of my favorite stories happened just this past winter during one of our horrible snowstorms. I’m sure you all remember those as well as I do! Anybody else looking forward to spring?

The snowstorm was just hitting us; it was starting to come down pretty hard. I wanted to take my service dog, Carmel, out before it would become impossible. I have a pooper scooper system, and I was trying to clean up after her when the stick spun and everything fell out. I’m a patient person, so I tried once more, and it happened again. Now I was getting frustrated. Carmel isn’t used to the snow; she was born in California. So I decided to bring her inside and have one of my aides hold the leash so I could go try again.

I rolled back outside; at this point, the snow was really coming down. I went where I’d left everything and realized the pooper scooper stick was now on the ground, and I couldn’t reach it. I had to go back inside, get the dog and roll back out. Carmel handed me the stick, I picked everything up, and you know what happened? The stick fell again. I was officially angry, wet and aggravated. My chair was getting wet, Carmel was getting wet, and I still couldn’t pick up after her. I began to do what anyone else would do — I cried. Bawled, actually.

I use a mask in the winter fro my asthma, and Carmel can’t stand it. I’ve worked with her on it, and she’s gotten better, but every time I put it on you can tell she gets uncomfortable; she doesn’t quite understand why my face “changes.”

So at this point, I had this mask on and I was crying hysterically and the snow was making everything a mess. Miserable. Suddenly, I felt something on my face. It was Carmel, upon my wheelchair. She was pawing at my face, even though that mask was on. She was trying to get me to stop crying. I started to cry more… and laugh. At the same time!

Service dogs help change peoples lives. I’ve had Carmel for four years now. Not only does she know and complete more than 50 different commands (like picking up dropped items and opening doors), she’s also a great emotional support. She makes me laugh and keeps me “on my toes” every day. She’s a joy in my life and I also met my husband, Frank, through Canine Companions for Independence. His service dog, Bastien, is a wonderful helper as well.

An added bonus is this: when I’m out in public, people don’t see my power chair anymore; they see my gorgeous labrador by my side.

Emily 355

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This Dancer Won’t Hide the Facial Birthmark an Agent Suggested She Photoshop Out

Cassandra Naud was born to stand out.

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Via Instagram

On her right cheek just under her eye, Naud has a large birthmark covered in hair. When she was born, her parents were given the option to remove it, but doing so would have risked badly scarring her face, The Daily Mail reported. They decided against it, and Naud says she’s grateful for that decision.

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Via Instagram

It’s part of who I am,” Naud told the outlet. “Having a birthmark distinguishes me and I don’t feel that it has ever held me back.”

Only once, while in high school, did she briefly consider removing it but changed her mind.

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Via Instagram

The 22-year-old from Alberta, Canada, moved to Los Angeles to study at the American Musical and Dramatic Academy, according to her Facebook page. She now works as a professional dancer.

A casting agent once told Naud to photoshop the mark out of her headshots, but she ignored the advice. Despite working in an industry where appearance is held to ridiculous standards, she’s had professional success and feels that her birthmark helps her stand out in a crowd.

People should appreciate their individuality,” she told The Daily Mail. “Times are changing, so don’t worry about looking normal. Don’t let bullies stop you and be proud of your uniqueness.”

Check out more of her stunning photos below:

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h/t A Plus

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The Ways My Nonverbal Son Communicates Without Words

He doesn’t speak the words.

He brings you your things from a drawer,
One by one.
He knows whose things belong to whom.
He leaves your shirt at the gate
Through which you will return to him,
When you go away.

My heart feels like a cloud before rain,
That is full of love, not sorrow,
Love for his sun-ray smile,
And his gapped-pearl teeth,
For his sing-song little words,
Golden hair, his
Shapes and numbers.
For his constant touch.

He is not what you think
When you see the word, the label –
And his mind is luminous and gorgeous,
Clever and unusual,
Sweet and funny,
More like a box of rainbow
Than a thread neatly spooled, just one color.

He doesn’t speak the words
— I love you —
(and he loves us with his kisses and snuggles,
because he is not what you think, no
checklist of deficiencies and lackings)
But he knows them when you speak them to him,
First thing in the morning,
Last thing at night. He said ma-ma once,
In the dark of a night of when he was only just one,
Little fingers stretched out to me, seeking my skin.
It’s taken nearly 18 months more
To begin to call me a word of his own,
Meeting me halfway there
And I think of old Ma Kettle, with her brood of
Children and her dishevelled hair, and I smile,
Thanks, Boodi.

He doesn’t speak the words —
He pinches and kicks and rages right now,
Striking out when he can’t communicate any other way,
Because communicating is so hard for him,
My bouncing, flapping, spinning, laughing boy,
And I have to learn these new lessons
Of patience and composure,
For real now, not
The passive aggressive seething under a calm surface
Of old — I have to remember just how much
He needs me, and how hard the world is
For him to feel his way through.
I have to remember to control my impulse to yell back,
To instead reach out, and in,
To draw him out of the vortex
And hold his hand,
Quiet these wild hearts of ours
With safe places instead.

Some words he doesn’t need.

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This post originally appeared on “Sand Has No Home.”

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I Go Back to Our Diagnosis Day in My Mind, But Here’s Why I Don’t Stay Long

TJ was diagnosed with autism in August of 2002.

It’s easy to go back to that sad, scary day. In an instant I am sitting on that couch with Sean, hearing those words, “He has autism.” And in an instant I feel that mix of pain, relief and complete grief.

I felt pain and grief for dreams we had to say goodbye to, and for a future we envisioned that was not to be. But I felt relief because finally, after months of knowing something wasn’t right, we could begin to help our boy.

Although I can be back there in an instant, with one single thought, I don’t stay for long. Now, a world away, we have a very capable almost 15-year-old (“A month and 3 days until my birthday mom!”).

He is in high school.

He gets himself from class to class.

He studies.

He does homework.

He bathes himself.

He dresses himself.

He has friends.  Good ones.

He texts with his brother. They razz each other back and forth.

He loves raunchy movies. Not too raunchy (think “Dodgeball”).

He loves to repeat the worst lines of those raunchy movies.

He laughs.

He smiles.

He loves.

He is TJ. He is his own growing, changing kid. He is amazing.

So while we think of that day almost 13 years ago, we don’t stay there for very long because there is no need to. He is forming his own future, with our help. And we can’t wait to see what happens next.

A version of this post originally appeared on I Don’t Have a Job

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