Living With Self-Injurious Behaviors

One thing I’ve learned as the mother to an autistic child, is that when your child has self-injurious behaviors, you’ll never be able to describe the feeling accurately.

I’ve also learned that if a person doesn’t know what you’re going through, you’ll never be heard accurately.

Any time that I have thought I might open up and share the fear, frustration, sorrow and deep gut wrenching pain, I’ve learned that unless a person has lived it as a parent or caregiver, they can never understand.

Sometimes you get even worse, you get the blank stares of confusion, pity, discomfort that you even decided to talk about it. ( I get it, what do you say?)

The only and best way I can describe it is entirely helpless.

It hurts.

It’s hurting my child, and I know it.

It’s hurting his siblings, and I know it.

It’s hurting our family life and I know it.

It’s killing me inside, defeating me and I know it.

It’s the most helpless and lonely feeling I’ve learned.

Before the behavior started, my feelings about autism were so much different. I’d known a mother who chose to place her son in a live-in facility with around the clock care, and really just couldn’t wrap my head around it.

What? Why on Earth would anyone take that route? Not me. “Not me. I’ll deal with anything that comes.”

There are mornings, where this attitude and way of thinking haunts me. Those words echo hard against my heart as I pick up what’s left of my spirit and try to get on with my day.

How?

I find myself often wondering how I’ve adapted to my son going into a rage over a loud sound, or being told no, and simply getting through it, and going on about our day.

How on Earth, have his siblings adapted to this, and what are they thinking? They love him, but what must be going through their minds in these moments.

Do they think I’m doing all I can, or are they going to grow up and tell their spouse and their kids how neglected their family life was?

Head bangs, screaming, biting, and sobbing, are part of our routine now. We literally just live it. Almost daily.

This side of autism is often unseen and isn’t part of everyone’s journey. This makes it even harder to be heard. Ouch.

We are now into territory that I also said “never” to.

We’ve tried oils, we’ve reworded phrases to take out the word “no” and offer other options up front. We’re on a medication trial that isn’t moving grains of sand when what we need is for them to move a whole mountain.

I have literally sat in front of my child’s online medical chart and considered sending his doctor a plea for medical marijuana, because WHY NOT?

We haven’t tried it all, till we’ve tried it all, right?!

I know it’s a hard thing to understand for others, I cannot judge. What would I think if I did not see it in my home. I can’t answer that, so I give grace when I’m sad that people don’t understand.

Through all of these feelings though, what I struggle to remember most, and what pulls me out of this deep cycle of downward thought, is that if I feel this badly, how must he be feeling?

For my heart, that is simply too much, and I guilt myself into moving on. That is how you adapt and move on friends. Just like that.

I dust myself off, pray the day gets better and hop online to look for the newest thing that might help. The search doesn’t and won’t end until there’s something I can do for my guy.

To the families out there who get it, I get you. Keep on trucking,

Autism won’t stop, and neither can you.

Written by, An Anonymous Mother

Finding Cooper’s Voice accepts guest posts from writers that choose to stay anonymous. I do this because so many of these topics are hard to talk about. The writers are worried about being shamed. They are worried about being judged. As a writer and mother I totally get it. But I also understand the importance of telling our stories. And this will ALWAYS be a safe place to do it.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.