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  • Writer's pictureJ. J. LeVan

MY BROTHER'S KEEPER






I love watching and reading my autism moms online. They are real and they are raw. They connect with this community in a way that enriches relationships.


I’ve tried to echo back with words from our journey, as well.

 

As a mother, when you share your most precious gifts with the world on social media, you need to expect pushback and uninvited comments.  But when you yield the world of your special needs young adult with limited communication skills to that world, there can be a churning wonder if these shares are crossing some unspoken line.


***

 

A few years ago, I was tantalized by a phrase in Nora Ephron’s book, I FEEL SORRY ABOUT MY NECK: AND OTHER THOUGHTS ON BEING A WOMAN.  Frankly, I was tantalized by the TITLE of the book which highlights the bodily changes in “women of a certain age.” My own neck has been catching my eye lately; it seems to be transforming into a loose and waggly brisket, and not the cute kind. 

 

The legendary phrase that Nora shared was, “Everything is copy.” 

 

“Everything is copy means that every single thing that happens to us can be used as creative fodder.” Nora was a well-established journalist, writer, and filmmaker of 2 of my favorite movies such as, YOU’VE GOT MAIL and SLEEPLESS IN SEATTLE. But was she right about this? Is everything truly copy? 


***


(Enter the siblings after seeing something I shared online:)


“Mom, why would you share that?”

“You should take that down.”

“Mom, don’t do that to him.”

“Too much, Mom.” 

 

Siblings of special needs children are often referred to as, “Glass Children.”  Glass children are siblings that, while standing by, are seen through because their special brother or sister is taking up all of the bandwidth of the parent.  I’ve been guilty of this as we raised our higher-needs autistic son. 

 

That being said, and praise be to God, our now adult, “Glass Children” have found bold voices to speak out for their brother.  These social-media-savvy youngsters have formed an alliance with him that is unshakeable.  They refuse to let certain aspects of his life to be offered as “fodder” before the masses. 

 

This is actually one of the most precious expressions of love that this aging mother’s heart could hear. They are unified in speaking on behalf of their brother, while he is still finding his voice.  

 

*** 

 

Content is everything online. 


Good content helps you squirrel up followers like a nut hoarder.  Quality content gives you status.  Shining content is the golden egg of TikTok, Instagram, and Facebook.  But is there a cost to be paid? 

 

These days, I find myself running everything I write through the filtered thought of those sibling words.  And after that, I run it past my son who struggles with being understood.  If it passes this DIY litmus test, then I share it with the rest of the world. 

 

These young people will be the guardians and gatekeepers of their brother’s future long after I am gone. As a “woman of a certain age," it would be almost negligent of me to crave the rewards of “content” over these boundary voices.

 

I won’t be here forever to speak for him; soon enough, I will pass this torch to them to carry.  Controlling anything on this autism path can prove more than challenging.  Being selective about what I share is something that I CAN control. I choose to hear their words, and in turn, SEE them and SEE their point of view.  

 

So, maybe my content is reined in a little bit because it may not have been able to eke its way through the gauntlet of love that has emerged in our family.  These sweet boundaries have caused me to realize that in THIS family everything, in fact, is not copy. 

 


“Speak up for the people who have no voice, for the rights of all the misfits. Speak out for justice!” Proverbs 31:8a

 

 

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