Learning a Very Important Lesson

Someday, when your autistic child is three or four or five, you will learn a very important lesson. You will learn that it isn’t about you. Or what you are missing out on.

It’s a very hard lesson to learn. At least it was for me. Because it didn’t make it any easier for my heart.

By that age, you will have went through many birthday parties with a child who doesn’t care. You will plan the party, invite the guests, buy the presents, and your child will be oblivious to the whole thing. Or they will scream, run, and cover their ears while you, your spouse and grandparents are gathered around the cake singing happy birthday.

You will fake a smile. You will tell them it will be better next year. You will spend the night crying. And wondering why.

Or maybe it’s a first day of preschool, a trip to meet Santa or a visit from the Tooth Fairy. Or even a trip to the zoo with a Mommy and Me Group. You will have this picture in your mind. You will see all the other children and their moms enjoying themselves and you will wonder why?

Why is this so hard for my child? Only you won’t have an answer. No matter what you do, even if you tell yourself it’s because your child is autistic, it still won’t fix that void of what you are missing out on. Not yet at least.

And you will grieve. Oh, my God will you grieve. You will watch your friends or siblings with their kids who seem to enjoy everything. And you will wonder why your child is different. And why it feels like you are missing out.

I remember wishing and crying because my son didn’t care about the tooth fairy. Or school shopping. Or having a birthday party. Or going on play dates.

It was crushing for many, many years. I’d be lying if I said it was easy even at age seven. It’s not.

But one day you will learn the lesson. You will see your child living life entirely different than every other child and it will click. And you will realize that your child isn’t missing out. You are. Which is entirely different.

In my case, we were at a park. A really, really fun park full of kids. They were playing tag and loving life. And my son was walking the perimeter of the fence, back and forth, back and forth, studying the blades of grass poking through the fence.

I remember looking behind me at the parents and kids laughing and smiling. And looking back at my son son laughing and smiling. And feeling the tears welling up in my eyes.

In that moment I realized it wasn’t about me. Or what I was missing out on. Because he wasn’t missing out on anything in his mind.

And for many years I’ve been happy with that realization. The birthday parties, the school photos, the events…they were all for me. So who cares right? Why force him to have a party? Or do something that he doesn’t what to do.

As long as he is happy. As long as he doesn’t care about missing out.

But lately, I’m starting to wonder if he will ever know what he is missing out on? Will he ever care?

And in a way, this almost feels harder.

It hit me today. Like it often does out of the blue.

I took my younger son school shopping. And then we visited his school. We walked in hand-and-hand and talked about his upcoming first day, riding the bus, eating lunch and making friends. He told me he was scared and excited. My heart soared at the conversation.

When I got home I let myself study Cooper. My beautiful seven-year-old. He was dancing around in circles. Flapping. Squealing. Being silly Cooper. Oblivious to everything around him. He had no idea his brother was starting Kindergarten in a few days. Or that he should be starting second grade. He didn’t know that his brother bought new clothes today or care that we picked him up socks, underwear and t-shirts too. He didn’t know we visited the school he should be going too.

I could feel myself starting to sink into that place I go to sometimes as a special needs mother. That sad place. The one I focus all my energy on never going too.

My son doesn’t know what he’s missing out on. Which is good. I do of course, which is crushing.

Will he ever know what it is like to go school shopping? And pick out new shoes and a backpack? Be so excited to deliver them to school. And pick out a locker. Start a first day of school and be so scared?

Will he ever know what it’s like to make a friend? Or fight with a friend? Or wonder if someone likes him?

Will he ever meet a girl? Know what it’s like to fall in love? Or have a crush? Have his heartbroken?

Tryout for a team? Be rejected? Or make the team?

Will he ever ride a roller coaster? Or a bike?

Run away from home? Sneak out? Be so mad at me he can’t stand it? Will he ever scream at me that he hates me?

Will he ever learn to drive a car and know that feeling of blaring the radio on your first drive alone? Will he ever go to his first concert?

Will he ever have a first beer? Throw up? Go to his first party?

Will he ever know the fear of interviewing for a job? Of being rejected or being hired?

Will he ever do any of the things that make up a life? The emotions. The feelings. The milestones.

Will he ever know what he is missing out on? Sometimes I think maybe. Sometimes I just don’t know.

And maybe, I don’t want him to know. Maybe it’s easier this way. Easier if I absorb all the sadness of missing out.

I let myself jump right into the rabbit hole that I spend so much time trying to avoid. With my younger son I don’t think about these milestones. Because I know they will come. Someday.

With Cooper though, I spend time wondering. Hoping. Or telling myself that it’s okay if they never happen.

It’s what gets me through.

Today though, I am telling myself maybe. Maybe some of them will happen. Because I can’t handle no right now. I can’t handle the thought that my seven year old might never. It’s just too much sometimes.

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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.

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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 my page!

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When my son was first diagnosed with autism no one was talking about it. Autism was hidden. I vow to change that.
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