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.

29 comments

  1. Every time my guy cuddles with me and lets me love and hug him I find joy. Those are the days that make my heart smile. My arm might be asleep, I may have to pee so bad I can’t even stand it. But I’m staying put. ❤

    Liked by 1 person

  2. Joy is being woke up by his giggling for what seems to be no reason than he’s awake. Joy is swinging together outside watching him watch the world. Joy is reading a book. Joy is knowing that at least for one more day I still have my family with me. And joy is although sad, knowing we aren’t alone in this thing called autism.

    Liked by 1 person

  3. Her laughter, even that little money giggle she gives me when I tell her to stop doing something she knows she’s not suppose to be doing in the first place. I’d do anything to see that joy on her face all the time. To hear that laughter! And it’s contagious, that joy! Thats my joy!

    Liked by 1 person

  4. Having my son with ASD has put my own life in perspective. Loving him has taught me to love myself and to love my imperfections. Knowing how to love myself has brought me great Joy! My son has taught me to be myself regardless what others might think. My son in a way has brought Joy back into my life!

    Liked by 1 person

  5. Watching my son knock down all the barriers put in his way brings me joy. We were told he probably wouldn’t talk much, if ever. He takes non stop. We were told that he wouldn’t be able to show affection. He tells hisfather and me every day that he loves us. If he wakes up and his little sister is still sleeping he will kiss get on the cheek, rub her shoulder and tell her he loves her. We were told he would have a tough time with empathy. He is the first person to recognize if some one is heading a tough time. He will go over hug them, pat them on the back and say there there. Don’t say a bad word around him because he will call you out on it and make you apologize. Everyday he does something that amazes me and it just folks me with joy to see him overcome all these obstacles.

    Liked by 1 person

  6. What brings me joy is my son’s cuddles and giggles. His laugh is wonderfully contagious. His smile is the sweetest. When he leans into my for a squeeze or a cuddle, it lifts my spirits. He may be non-verbal, but I know he is happy and he loves me when I see that sparkle in his eyes when he looks at me and we share our giggles and cuddles.
    I also find joy in connecting with other autism parents who just get it; you know, the members of our “tribe.”
    Joy is celebrating every little accomplishment my son achieves.
    Joy is also having one-on-one time with my high-functioning son, and witnessing those rare moments where his personality is able to shine through the difficult behaviours.
    Joy is watching my oldest, my NT daughter, having fun playing with her brothers. Those precious moments of bonding between little brother and big sister, and those rare moments of peaceful interaction between middle brother and big sister, make my heart so happy.

    Liked by 1 person

    1. That is so wonderful that you are raising a group who love each other and that you find happiness watching that love!

      And yes, seeing love in behaviors makes so many moments worthwhile.

      Thank you for connecting. It’s good to have a tribe ❤

      Like

  7. There’s certainly days that choosing joy seems like the most daunting task ever put on front of me. The school meetings, the advocating, the fight to help others understand your children. It can suck the life right out if you. But then, someone gets it. They understand you, and they see your children in a whole new light. All of the pushing forth and never giving up has changed the life of your children. I have begun to embrace it. To find joy in the sweet smell of victory. Even though mine are older, my kids don’t know how much I’ve fought for a better life for them, and that’s okay. It makes me experience their true raw emotions of success with even more happiness. Their hugs and laughs and moments of happiness with even more pleasure. They are coming into their own, and watching it brings me joy. There’s not always positive moments. Things are challenging. But I’ll relish in the moments of unaltered joy and giggles whenever I can.

    Liked by 1 person

  8. What brings me joy is when my son tells me he loves me, or when he is laughing so hard at something as simple as a page in a book. His happiness is my most treasured joy. I would do anything to make it last forever.

    Liked by 1 person

  9. When we connect and he is fully present and talking to me about what is going on rather than his latest obsession… I find joy there. ( there are other things but this is so special)

    Liked by 1 person

  10. My family gives me joy 🙂 the sound of my children’s laughter always makes me smile. As a mom of two on the spectrum, choosing joy is a choice I try to make daily.

    Liked by 1 person

  11. Right now we are in the early stages of our journey, my son and I. I’m still in that “hard to find joy” place, but he’s 10 and I remember easier times (puberty coming on has brought out the more noticeable and less enjoyable aspects of his personal quirks) so that helps. But for right now I find joy in the days that we can all coexist mostly peacefully; joy in moments like last night when he complimented his brother out of the blue- the awareness that his brother has been needing some love and uplifting was wonderful to see! I guess what brings me joy is the love that holds us together, because even on the worst days, we always end our day with hugs, kisses, and “I love you”s and that is what I live for with my kids, the love.

    Liked by 1 person

    1. Hugs and kudos to you. I can’t imagine puberty and even if I could I wouldn’t be ready to go there… I can only imagine. Peace to you and yours and I’m so grateful you get to end your days with love. We do, too and it helps keep the rough days from feeling like they will never end ❤

      Like

  12. I am not going to lie, my joy is all shuffled around between outbursts, tantrums and meltdowns. It’s those brief moments when those words form and he calls me mamma. When he uses his words during horseback therapy without being told to. It’s tjose brief seconds that bring me joy. And reminds me that God chose me to care for him. In the midst of the storm, he brings me joy, and God lets me be part of this journey.

    Liked by 1 person

  13. I have always found joy in children. I grew up in a large extended family and from the time I could, I was helping take care of every baby that was born lol. I remember when my doctor looked me in the eye and said I’d never be able to conceive a child. I was devastated, I always wanted to be a mommy :*( I went about life working with children, finding joy in other people’s children, hiding the disappointment that I’d never hold my own child in my arms……or would I??? In 2007, I was a couple of months late, not unusual as I was extremely irregular, but my mom said I needed to take a test just to be sure, I’m sure I rolled my eyes several times as I peed on that stick…..I about passed out when I saw those 2 blue lines, mom said she’ll never forget the look on my face when I showed her the stick lol. On Jan 12th 2008 after a hard pregnancy and 72 hrs of labor I had an emergency c section and woke up to a beautiful baby boy, that my friends was true joy! Joy like I’d never known! He was diagnosed with autism at 2 years old, we have our struggles, but I wouldn’t change him for all the world! Oh, and by the way, I’d love to track that Dr down and punch him in the nose and tell him how wrong he was….because in 2010, I gave birth to a bouncing baby girl, who doubled my joy! My heart is full of love and joy….it overflows!!!

    Liked by 1 person

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