The Ways My Nonverbal Son Communicates Without Words

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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
Ribbons
Unravelled
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
Ma,
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

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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!”).

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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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The Inventive Way This Artist Proves His Disability Is No Limitation

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Michael Hanrahan is an artist with a painting method you may not have considered before.

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Via Facebook

Hanrahan, 29, has cerebral palsy. He cannot speak and uses a wheelchair, according to The Telegraph. But the artist has devised inventive ways to surpass his body’s limitations — he uses mops, attaches paint tubes to sticks and fastens paint brushes to his helmet to produce his works of art.

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Via Facebook
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Via Facebook

The London-based painter, also known as “Stigy,” gets inspiration from abstract artists like Jackson Pollock and Banksy, according to his website. His subject matter covers a broad range including landscapes, favorite bands, the concept of color and a sport he plays called boccia. He also turns to art when he feels frustrated about the way people perceive his disability.

Frustration
“Frustration” via Facebook
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“Boccia” via Facebook

Social media platforms have helped Hanrahan achieve worldwide success. He started receiving commissions for his work as soon as he began posting pictures of his canvasses on Facebook. He’s since created a website, a Twitter account and an online portfolio. Now, his paintings sell online for hundreds of dollars, and he receives commissions from as far away as Italy and Hong Kong, all thanks to his social media presence.

For Hanrahan, social media has offered more than just a successful career — it’s provided him with a forum to communicate with others and make friends. “It turned my life around,” he told The Telegraph. “[It] turned my social life around.”

A Sunset Over a Beach
“Sunset Over a Beach” via Facebook
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“Cash In Then Cash Out” via Facebook
Under the Sea
“Under the Sea” via Facebook
Beach
“Beach” via Facebook

To see more of Hanrahan’s paintings and to purchase his work, visit his website and Facebook page.

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The Truth About ‘Autism Awareness’

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“Autism” is quite the buzzword.

We have our own month.

Our own day.

Walks and runs and lightbulbs.

I struggle with the gimmicky nature of it all.

I also benefit from it.

So does my boy.

There are a million diagnoses in our world.

We could be living with any one of those.

We could be wishing that everyone or someone or anyone knew or understood our struggles on any level.

We could be voiceless.

But because so many have gone before us, our path is already a path.

Our voices are heard.

Our struggles and triumphs are televised and memorialized in blogs and documentaries and T-shirts and banners.

While we may choose to forge new paths or we may look to different voices to advocate for us, gratitude for those who first began awareness campaigns is paramount.

Be grateful.

That doesn’t mean you can’t make your own way.

But be grateful that when we say, “He is autistic,” people have heard the word.

That neighbors have YouTubed Temple Grandin.

That teachers have researched for IEPs.

That therapists have created sensory equipment and mothers have blogged curriculum and doctors have studied causes and correlations.

Be grateful that we are not invisible.

As we begin the month of blowing up Facebook newsfeeds and mailboxes campaigning for our loved ones, be gracious.

Remember those who still have no advocates.

Remember that no advocacy is ever perfect.

Remember that no parent or child or teacher or therapist is ever 100 percent right or 100 percent wrong.

Remember that we are doing this not to be superior or to demand respect or to get “more.”

If we are doing it for the right reason, we are doing it for him.

And for others like him.

We are doing it to say,

“He’s here.

He’s loved.

He’s worthy.

And we want you to know.”

That, my friends, is autism awareness.

That, my friends, is the point of sharing.

And I am grateful for the opportunity.

Happy April.

Joy

This post originally appeared on Letters from a Spectrum Mom.

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23 People Share What They’d Say to Someone Who’s Pulled Away Since a Diagnosis

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People who are unsure of how to react to a loved one’s diagnosis sometimes distance themselves, intentionally or not. This can cause lasting pain and confusion on both sides.

To help clear the air, we asked our readers this question: “If you could say something to a close friend or family member who has pulled away since your diagnosis, what would it be?” 

Here are some of their responses:

1. “Don’t be afraid and hide. We’re going to be all right, and we’re going to learn the true meaning of unconditional love and joy together.” — Joyce Cabrera

2. “I don’t hold a grudge. I understand this isn’t for everyone. But if you finally feel ready to be a part of our lives, I’d welcome you like I would anybody. We all make mistakes. This has been a learning experience for me, too.” — Elizabeth Pasten

3. My daughter can’t change her disability, but you can change your perception.” — Gemma Bryan

Gemma Bryan

4. “I’m here if you have questions. It’s OK if you don’t know what to say or do. The door is open, but I’m not going to chase you.” — Heather Schulze Sciacca

5. “I hope you can learn from the experience and be better prepared when the next person in your life has a tough diagnosis.” — Kerith Zaccaria Stull

6. “Don’t be afraid. I will teach you what it is all about.” — Katy Purr

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7. “I hope you one day find courage for those who will be in your life.” — Rebecca Marcario

8. “I may be different from your child, but I’m amazing, unique, kind, caring, creative, smart, funny and so much more. Things aren’t always easy, and the journey can be a bumpy one, but the end result is beautiful. I have so much to teach the world, and it starts with you.” — Chloe Rothschild

9. “My daughter loves you no less.” — Shen Mager

10. “I not only want you here, I need you here.” — Melissa Pelitera

Marissa Pelitera 1

11. “I would say nothing because I have not been perfect for everyone who has been diagnosed with something.” — Angela Loeppky

12. “I’m sorry to see you go, but you made realize who my true friends really are.” — Lisa Hayes

13. “I hope someday you will awaken to the beauty and gratitude you have been missing.” — Melanie Perkins McLaughlin

14.I wish you could look beyond what you see.” — Chris Morrison-States

15. “When you’re ready, I’ll be here. Tomorrow, next week, next year.” — Lynea Kilduff

Lynea Kilduff

16. “Welcome to the new normal. I still need you.” — Wayne Kirk

17. “Take a bit of time and patience to remember that no one has changed since the diagnosis. Don’t miss out on my son’s life because it will change yours for the better.” — Victoria Helen Holdsworth

18. “I wouldn’t be quick to write that person off. If I give them a chance, they could end up being one of my kid’s best supporters.” — Ruth Fannin

19. “I love you.” — Josh Hersom

Josh Hersom

20. “Just because I don’t have time for you like I used to doesn’t mean I don’t still love you. You haven’t been replaced in my life. I miss you.” — Jessie Foster

21. “I forgive you.” — Kate Sytsma

22. “You’re missing out on an amazing little boy and his journey of strength and perseverance.” — Kim Hanner-Calandri

23. “Come on in, the water’s fine!” — Kim Peterson

Kim Peterson

What would you say to someone who has become distant since you or a loved one received a difficult diagnosis? Let us know in the comments.

*Some responses have been shortened and edited.

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This Baby Was Born Without a Nose. His Parents Say He’s Perfect.

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Timothy Eli Thompson was born on March 4, 2015 at South Baldwin Hospital in Alabama to Brandi McGlathery and Troy Thompson, according to his Facebook page. He weighed 6 pounds and 8 ounces and was born with a rare condition called congenital arhinia. This means he doesn’t have a nose.

 

Congenital arhinia is the absence of nasal passages and structures at birth, and fewer than 30 cases have been reported, according to the Journal of Medical Case Reports. His mother says that the chances of being born with Eli’s condition is 1 in 197 million, according to the Mobile Press-Register.

Baby Eli began breathing out of his mouth immediately after birth, McGlathery told the outlet. Then, at 5 days old, he had a tracheotomy which further helps him to breath. He’s been a happier baby ever since.

 

It’s possible that someday a plastic surgeon could build Eli an external nose, but his family will cross that bridge when the time comes.

We think he’s perfect the way he is,” McGlathery told thePress-Register. “Until the day he wants to have a nose, we don’t want to touch him.”

Check out some more photos of Baby Eli below:

 

For more information on Eli, visit his Facebook page or go to his GoFundMe site.

h/t BuzzFeed

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