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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How My Brother With Autism Made My Wedding Unforgettable

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I remember my wedding day vividly for a number of reasons. I married the most amazing man who loves me for all that I am. Our wedding was planned with love. We spent hours crafting a ceremony that was perfectly us. We found poems and stories to include that spoke of our relationship. It was impossible for me to read the final draft of our wedding ceremony without tears in my eyes.

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Our bridal party included our dear friends and siblings. My brother, Jamie, was one of our groomsmen.  Jamie has been diagnosed with PDD/NOS and mental retardation. Sometimes Jamie was happy to be a part of our bridal party. Sometimes he told me that he was too nervous to be a part of it, but we talked him through it. We explained what would happen.

My husband, James, told him how much it would mean to both of us for him to be up there with us. James said he would have another brother. So Jamie agreed.

We’ve talked to so many people since our wedding day. They tell us how beautiful our wedding was, and how happy James and I were. But, without fail, the part that people remember the most is Jamie.

When the minister asked if the community around us affirmed our wedding, everybody was quiet, still listening. Into that silence, Jamie shouted YES. He didn’t hesitate. He shouted. YES. There was a pause, and then laughter. And clapping. Because Jamie’s declaration of YES was exactly what our wedding needed.

Jamie didn’t know that we would be asking for an affirmation, or even what that meant.  But he did know that that was the moment to say it, and if you’re going to say it, you may as well say it as loud as you can.  The ceremony stopped as everyone cheered for Jamie, who was grinning from ear to ear.  He didn’t stop smiling for the rest of the day.

I think back on this moment often. It was perfect. Jamie was perfect. We would have had a lovely day regardless of what happened; we were getting married! But the fact that Jamie took that day and really made his mark on it made it another thing all together.

Our wedding photographer managed to capture that moment after Jamie said yes. You can see our joy, and the joy of everyone around us. What better wedding gift could we have asked for?

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When a Simple Question From My Student Left the Whole Room Speechless

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I assist in a pre-K class that has students with “differing abilities” and then five “typicals” (students who require no additional resources).

One of our students, MJ, has cerebral palsy. MJ has the thickest darkest curly hair. I get the biggest smile from him when I run my hands through those curls. His smile brings one to my face as well.

At the beginning of the year, typical students who have not had one-on-one daily contact with kids with differing abilities tend to kind of step back, stare and ask lots of questions. By the time the first 30 days of school have passed, it’s like the kids have known each other forever. Speech teachers, physical therapists, teachers for deaf and hard-of-hearing students, and occupational therapists visit our classroom daily. We hear a knock and the kids look up and see which “helping” teacher it is and go back to what they’re doing. It’s like asking a student to pass a crayon; in other words, nothing out of the ordinary.

MJ’s mom is expecting a baby. One day she was in class and all the kids were asking about the baby. Boy or girl? Boy. Name picked out? Christian. When is the baby due? March.

Then one of our typical students, Susie,  looked at MJ and asked, “Is the baby going to be like MJ?”

Silence filled the air. All the grown-ups looked around at each other. I took a deep breath and was going to remind the children about what cerebral palsy is… but then the student who asked the question, Susie, piped up in a very matter-of-fact way: “If he is going to have dark curly hair like MJ, he better get used to having Ms. Murray running her hands through his thick curly black hair. Ms. Murray loves those curls. She says the curls are his hair smiling.” Susie went back to playing with MJ.

I couldn’t help but smile and shake my head. My thought immediately went to MJ’s differing ability, but this sweet classmate didn’t even have that on her mind. It was the dark hair with curls!

P.S.: Christian Xavier was born March 25… and he has a head full of dark curly hair!

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 [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Here’s What You Can’t Take From My Son, Cerebral Palsy

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To Cerebral Palsy,

I had heard your name in passing but never blinked an eye. You were not important to me then, because you were not in my life and I didn’t expect you ever would be. But then you viciously barged into our lives 21 months ago and left an everlasting impression. I would rather not know you and I don’t like you one bit.

You turned our world upside down. Everything I thought I knew and planned for, everything I understood and trusted went out the door on the day my sons were born.

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My son has a name, and it does not include cerebral palsy as a prefix or suffix. But my son also has an identical twin, though they have been polar opposites since birth.

I have not reached the forgiveness stage just yet, or the time where I am ready to thank you, CP, for what you have taught me. I wonder what we are being taught by this hard, long lesson.

My boy had a catheter, a ventilator, a CPAP, multiple X-rays, multiple blood draws, a phenobarbital and antibiotic cocktail, an EKG, 2 EEGs with 24 electrodes glues to his tiny head, 2 blood transfusions, forced nutrition instead of breast milk, an MRI of his brain and constant monitoring of his heart, temperature and oxygen in his first week of life. He was in the NICU of a hospital with a different stranger every day for 25 days and his twin spent the first 25 days of his life visiting his brother in the hospital every day.

My boy cried 18 hours a day for the first 6 months of his life. He was diagnosed with colic, reflux and pain; we just tried to survive every day. It takes 1 to 4 hours a night to put him to bed because he can’t be left alone unless he is in a deep sleep. He has such spasticity that he arches so hard he bruises my arms, and carrying and caring for him causes physical pain many days.

He’s been to a dozen different specialists and continues to get three to five therapy sessions every week, from PT, OT, speech, swimming, Anat Baniel, chiropractic, craniosacral, cranial osteopathy, Musgatova and more. Because of you my boy still can’t ride in the car without screaming the entire ride. Because of you, it is easier to stay at home then to try to do anything that involving being out in public. My 21-month-old looks and acts like a 4-month-old, and is unable to hold his head up completely, roll over (unless accidentally), sit, stand, walk or talk.

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However, you have not taken Berkley’s spirit or spunk. He is by far the strongest person I have ever met. He is brave, resilient, courageous, smart, handsome, amazing and he has an awesome sense of humor.

You may have taken away the ability for his body to cooperate with his brain, but he works harder at everything then any person I know.

Ultimately, he just wants to be held, protected, loved and doted on. That has become my job for now and I wake up each day with hope that today will be better in all ways.

 

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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