Autism Awareness: Choosing Joy

There is division everywhere. People disagree. They disagree so strongly that they often overlook the important things in life. Don’t believe me? I seem to recall a recent argument over a white/gold-bronze/gray-blue/black dress.

Do you want to know what I saw? Periwinkle:purple:blue and bronze.

I didn’t fit into any of the major camps.

I also looked repeatedly. Trying to see what others see. Comparing. And I came to a decision: whatever I see is fine. Whatever you see is fine. The differences are interesting, and somewhat curious, but hardly fatal.

So when I write about autism or parenting or emotions or behavior or any of the other things that I think about on a daily basis, I know not everyone will agree.

And to me that’s fine.

Interesting.

Because how I see life and how you see life are different. We are different.

So as you read what I write about my emotions and my experiences please remember that they are my journey and some will agree and some will disagree and some will have to look very, very closely in order to see anything in them they can recognize.

All I ask is that you take the time to look and listen and think before you respond.

Because I am ever so much more delicate than a lace dress.

❤

AUTISM AWARENESS: Choosing Joy

Finding my joy was easier as a child. As a teen. Even a young adult.

The heartbreak of relationships and a dream of being a writer that met obstacles like talent and grammar and platform and self-discipline slowly stole that joy.

Or rather I allowed those things to steal my joy.

Until finding it became very, very difficult.

I don’t know if the way I lived most of my adult years from 25-35 would have qualified as depressed. Mostly it was a kind of pervasive hopelessness. A kind of non-joy.

I didn’t plan on having children.

I had babysat all of my life and I loved the hugs and the songs and the imagination of children.

But I knew myself to be too self-centered and too spoiled to have any of my own.

And I will never forget the sharp rebuttal from someone I had dated who said I would be a horrible mother. To my face. I was walking in a black and white world and some children were in a place I didn’t think was appropriate and because I had authority I used it to demand they leave. I was keeping them safe.

But I was also unflinching. Hard.

Non-joyous.

And as much as it hurt, in that moment he was also right. That would have been a horrible way to mother.

Because children are fragile.

They can be hurt by those they love.

They can become wounded.

Hard.

When I had My Boy I was mostly in awe. Not happy. In awe.

Finding joy was still difficult.

He was beautiful. Perfect.

But I also had a baby boy who didn’t smile or laugh unless he was tickled or running.

He didn’t smile just seeing my face. I had to tickle him to get him to smile for pictures. Which worked, but also hurt my heart.

He didn’t giggle when I talked.

He didn’t coo unless I touched his lips.

He didn’t sleep.

Which means I didn’t sleep.

Until his 4th birthday he never slept more than 2-3 hours at a time.

It was hard to find my joy.

It was hard to be joyous.

I don’t know exactly when it changed, but I do remember before it did. At my lowest.

He was 2.5 and he didn’t talk and he screamed for hours on end and he had night terrors and he ate bugs and by all that’s holy I swear his flesh caught fire every time I buckled him in a carseat.

I was back in college. I had given up writing.

I was majoring in Early Childhood Education.

Because I loved kids but I had no idea what to do with them. Because years of babysitting had made having kids seem fun and I was not having fun. And part of me blamed my selfish nature. And part of me blamed my black-and-white nature.

And the largest part of me thought “This. This is why I shouldn’t have had children. I am incapable. I am a horrible mother.”

So I enrolled in ECE because I thought someone there could teach me what to do.

And they did.

I found a large part of what I needed to learn in the “Special Kids with Special Needs” course.

Screaming. Biting. Hitting. No cooing. No speaking. No responding to his name. Bolting – omg did he bolt. Eating issue. Inability to sit still. Bizarre behaviors. Aggression. Spitting. Lack of ability to play with toys. Lack of eye contact. Which in our case was not lack of eye contact but actually a screaming banshee if you did make eye contact.

Boy: (screaming)

Me: QUIT LOOKING AT HIM. QUIT LOOKING AT HIM!! YOU’RE MAKING HIM SCREAM.

Grandma: I should be able to look at him.

Me: You CAN’T! You are making. Him. Scream.

But there it was. In my book.

And suddenly a little bit of the weight of my own inadequacy started to lift.

And while I knew I might be grasping for straws I also knew that he was textbook. That I could walk down that Autism checklist and put a picture of his beautiful little face right next to each marker.

And over the years my understanding of autism and My Boy’s struggles have been a bit of a rollercoaster.

Because it isn’t just autism.

It’s ADHD. And it’s oppositional defiance. And it’s disordered language.

And it’s me. Not just struggling to find a way to parent him, but to find a way to exist with myself.

To find my joy.

Not just in parenting My Boy or in advocating for him.

But to find it within myself.

Maybe a lot of you started off with joy.

Maybe finding your way back was easier.

But I’d been without it for so long that it was hard.

But it did come.

In bits and pieces.

As My Boy found his voice and as I learned how to communicate with him and as I saw the absolutely heartbreaking beauty in his very existence, I began to find joy in so many little moments that my heart began to fill.

I found joy in the quiet moments before he woke in the morning. So I chose to wake before he did no matter how tired.

I found joy in his laughter. So I chose to tickle him and chase him more so I could hear it more.

I found joy in the peace of prayer. So I chose to pray. Every day. Even if all I could pray was “please.’

I found joy in being strong. So I chose to be strong when I wanted to cry. To be his strength when he had none.

I found joy in being his mom. So I chose to be the best one I could be.

I chose joy.

The rough days are still rough.

But there is a confidence in me that wasn’t there before he arrived.

And while it’s too weighty to put my current, joyful existence on his shoulders, I know that he was the reason I began to test my own strength and find my own joy.

If he wasn’t autistic, I don’t know what our lives would be like.

If he hadn’t struggled at a painful level as a toddler I don’t know that I would have spent hours and hours and hours every day praying for hope and peace and a plan.

If he hadn’t screamed at night I don’t know that I would have stared up at the ceiling in the dark, rocking him, begging God to help me.

If he hadn’t needed me so very, very, very much I don’t know that I would have gotten over myself.

If he hadn’t needed an advocate I don’t know that anyone else would ever have been more important to me than me.

If he hadn’t been autistic, I don’t know that I would ever have fully, completely and as nakedly turned to God.

And found myself.

And found joy.

So when you read about our lives and I speak from a place of love and forgiveness and joy, I want you to know that it was a hard place to find.

It’s a place I have to root myself every day.

It’s a choice.

It’s a need.

And while all these other things are beyond my control and beyond My Boy’s control and while life seems unfair or hard or ugly sometimes, I know now what I never understood before:

Joy is a choice.

Maybe one made out of desperation.

But a choice.

And today, like so many days before, I choose joy.

❤

#SpectrumMom

P.S.

The dress is periwinkle.

P.P.S

Autism Awareness Giveaway posting: See Facebook Letters From A Spectrum Mom for details.