How a Seven-Year-Old Can Educate the World: #ShareYourAutism

My seven-year-old son recently asked me how many surgeries he had to have before we realized he had autism.

It was a reminder to me of how little any of us really understand autism. In truth, trying to explain his diagnosis to him was hard. It’s so, well, open-ended. It’s a spectrum, right? People hear the word autism and picture a puzzle piece.

During the same conversation about the amount of surgeries it took to determine his diagnosis, my son told me he met a boy whose brain worked differently too. He has…hamburger something?

Aspergers. Which isn’t technically a diagnosis anymore.

And the confusion builds…

What does autism mean?

The prefix “auto” means “oneself” and the suffix “ism” is used to create action nouns, so the term literally means, “to retreat within one’s self.”

In 1908, the term was created by Eugen Bleuler to describe his withdrawn schizophrenic patients.

In the DSM-V, it’s categorized as Autism Spectrum Disorder 299.0.

The Oxford Dictionary defines it as a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

What does autism mean?

Here’s what I know.

My son has autism, so it is a word that is very personal to me. Even more so to my son. He wants to understand. Ultimately, I can only share with him what limited knowledge our medical field currently has while they continue to test hypotheses and make claims that may or may not be accurate.

So we wait…

In the meantime, what we all have, are our stories. Stories of our own experiences with autism, whether it be directly or as a loved one.

My son, at seven years old, had the courage to share his story to his entire first grade class. With help, he created a Google Slide Presentation, read from it using the classroom’s Smartboard, and answered questions from his peers. He even redirected the class when they got a bit off-topic (Who’s your favorite Pokemon?) by moving back to a specific slide and asking, “Okay, who has a question about autism?”

In our house, autism means being brave.

What raising a child with autism has taught me is that we shouldn’t avoid talking about it. We shouldn’t be embarrassed or afraid; autism is another way of thinking and viewing the world. It may look differently or feel differently or act differently from what our society views as normal, but that doesn’t make it less. In fact, as I’ve come to learn, it makes life more.

I ask all of you, not just this month of Autism Awareness, but from now on, to not be afraid to talk about our differences with our children. If you don’t know the answers, let them know. Then go find those answers with them. If you shy away from the hard questions – What’s wrong with that kid? Why is he spinning around and flapping his arms? – you are inherently teaching them that what they see is something to be afraid of. Fear stems from a lack of knowledge.

Sharing stories can ease that fear.

My son, and so many others like him, are a living symbol of autism. It is a badge of honor, as well as a heavy burden. I ask all of you to lighten his load. Accept him. Love him. Embrace him.

Continue to share and to listen so the stigma and fear and frustration surrounding autism can fade.

My son did.

So can you.

#ShareYourAutism

My son’s presentation (modified for anonymity)
Please feel free to modify and use!

 

This post also proudly appears on The Mighty.

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Being Brave

Four years ago, my son was diagnosed with autism. He was three. It was scary and confusing and very lonely.

Four years ago, I started this blog. It brought me both relief and compassion as I learned with other parents how to understand and help my struggling child. I learned how to laugh and to cry at my mistakes and misunderstandings. I had found my tribe.

Then I stopped. It’s been nearly two years since I last posted and I’ve spent much of that time grappling with why. Busy with work. Busy with raising children.

Busy being afraid.

Two years ago, I posted something heartfelt, and it was received with heartless comments. Many a blogger friend had told me not to bother reading comments at all for that very reason, but my temptation was too strong. In retrospect, the comments paled in comparison to some my blogger peers had endured, but it was the first time I wasn’t received with open arms. It hurt because the negativity was directed towards my son. Strangers claimed that he should be institutionalized, that he was a danger to other children.

It scared me so much that I asked Scary Mommy to change the author name to Anonymous. Then I never looked at that post again, and I put my blog – my writing – to rest.

Two years went by.

Then this past December, something stirred within me. I was in my son’s first grade classroom, watching him present to his peers what autism is and that he has it.

At seven years old, my son is one of the bravest people I know.

A few weeks went went by, and I couldn’t shake the feeling that I needed to write, to share my son’s extraordinary story, but I wasn’t ready yet to let that fear go. It manifested itself into anger. Carrying the weight of all these stories wore me down; I found myself snapping at my friends, my coworkers, my students, my husband, my children – myself.

Then something extraordinary happened.

I attended my son’s annual IEP and was overwhelmed with pride at all the success stories his teacher and support staff shared. At one point, his social worker said, “He is already such an advocate for autism!”

It stopped me in my tracks. “Yes,” I said with a smile. “Yes, he certainly is.”

If my seven year-old son can be brave, so can I. It’s time for me to start advocating for him again.

Someone I greatly respect told me recently that I need to make writing a necessary part of my day. Treat it like taking a shower or brushing your teeth. Writing is an integral part of who you are as a person.

So I’m writing again. I can’t wait to tell you everything you’ve missed these last two years. From learning about his diagnosis to defending himself against a first grade fight club, I can’t wait to share how brave and beautiful my son is.

I can’t wait to share my story – the story of being his mother – with you.

Stay tuned.

Oh, and here’s the post that once scared me that I now proudly share: An Open Letter to my Son’s Preschool Class.

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A heartfelt thank-you (and Happy New Year!)

To my followers, hello!  I’ve been off the radar for a little while now.  I could give you a litany of excuses for why I haven’t been writing, but they can all be summed up in the following phrase: I’m a working mom.  I’m forever impressed by those of you who are too and still manage to keep up with all of your wonderfully entertaining and enlightening posts.  My hats off to you, Super Moms!

I couldn’t end the year without saying something though.

Thank you.  

If you’ve been following regularly, you know this has been a tumultuous year.  Having my four year-old son diagnosed with autism last winter changed my life in ways I’m still figuring out.  Much of the year has been full of heartache, frustration, anger, and a new level of stress, but it has also brought unforeseen blessings.

One of the greatest blessings has been you.  Finding an outlet to share my frustrations has been a catharsis I never knew how badly I needed.  Reading your own blogs has helped me see I am far from alone in my struggles.  Reading your blogs has brought me clarity, comfort, and new-found compassion.  Fellow writers, you are all abundantly talented; reading your words brings me real joy (and often so much laughter).  Fellow readers, knowing you are there, reading my words, compels me to keep writing and sharing my story, however inconsequential it may be.

Whatever your New Year’s resolutions may be, I wish you the greatest success.

I resolve to stop being so hard on myself and embrace my own “flaws” as quirks that actually help me understand my son like no one else.

Oh, I also resolve to write more.  It truly is so cathartic!

Happy New Year, everyone!

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