Mama, I Don’t Want my Baby Brother to Have Autism

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On Sundays we eat dinner at Jamie’s parents. Often, this is our only trip outside of our house as a family. We treasure it. We look forward to it.

They only live 10 minutes or so away but sometimes the trips can feel like an eternity.

I of course was sitting in the backseat with both boys. On trips longer than a few minutes, I often sit between them.

One of Cooper’s biggest struggles is still vehicle safety. When he gets anxious, or his Kindle stops working to his liking, or we turn the wrong way, he gets wild. He kicks and flails and typically, his brother takes the brunt.

And before you go and say how horrible Sawyer has it, know that they are brothers, and both are instigators. Neither are innocent.

But two boys fighting in a car can make even the calmest of parents lose it. This I know.

Anyhow, we had to stop at Costco for something. So, Jamie ran in and I sat with the boys. Entertaining one. Playing referee for the other.

Cooper hates stopping anywhere. Gas stations, drive thrus, stoplights, anywhere. He just can’t get a grasp on the fact that it will only be a few minutes.

As he was kicking and whining next to me, Sawyer and I were trying to have a conversation. He was asking me questions about the baby boy in my tummy. His brother.

How big is he mama?

How does he breathe in there?

Show me where his head is right now?

Is he kicking?

Should I talk to him?

How does he get out of your tummy? Do you poop him out?

We brainstormed names. His favorites are fart and toilet.

The whole time he was rubbing my tummy. Every few minutes he’d lay his head on my stomach and listen. He’d even say a few words to him.

As I sat there I thought, this is it. This is exactly what I was hoping would happen. He is so excited he can hardly stand it. He tells every person we meet that he is going to be a big brother.

These are the moments that I prayed for.

He went on to ask if his brother will play baseball. Or soccer.

He asked to see a picture of how big he is right now. I always show him videos online of animated ultrasounds.

Sawyer’s eyes got wide as he watched the 27 week baby kick around. And quickly asked when seeing the umbilical cord…’Is that his giant penis?’

I almost died. He asks the best questions.

As Jamie’s trip inside Costco neared ten minutes, Cooper was getting more agitated. Feet on the window. Throwing a head into me. A slap here and there.

Quite literally, the whole truck was shaking.

I of course was talking him through it. This is our life. But I also knew that this was inevitable. Right now, this is our reality. Car safety is a very real goal of ours. We have a newborn coming. We need to be able to travel places together. We know that. Trust me.

And then Sawyer said the one thing I knew was coming. I have been waiting for him to say it for months.

‘Mama, I don’t want my baby brother to have autism.’

I didn’t gasp. I gave no reaction at all.

Sawyer and I sat quiet for what felt like an eternity. I assume it was 30 seconds. He rubbed my belly the whole time.

‘Mama, did you hear me?’

I felt sick. On my right side, I had my amazing, challenging, beautiful, severely autistic son. The one who is completely in his own world most of the time. The one we will spend our life caring for.

On my left, my Sawyer. My five year old. My rock. The one who has given me every experience a parent should have. Both perfect.

I want you to know that we all think we are going to say the right things in these kinds of moments. We all think we have the answers. That we know how to react.

I even prepared for this question.

But I still didn’t know what to say. I’m not a saint.

I don’t want my baby to have autism either. But if I say that to Sawyer, he will think it’s a bad thing. And it’s not.

I simply responded with, ‘Why?’ I needed to hear his answer.

And then with the innocence of a five year old boy who has never played a game with his older brother, or rode a bike with him, or shared a conversation, he said, ‘Because then he will be like Cooper. And I still won’t have a brother.’

I stared forward and silently willed myself not to cry.

I felt that one in my heart, mind, stomach and soul.

Sawyer lives so much like a single child. That is a fact. Cooper typically moves like a ghost throughout our house, never ever acknowledging his brother. Cooper doesn’t join us for games of Candy-land or movies or walks. If we go somewhere outside of our home, like a movie or a parade, Cooper stays at home.

I know Sawyer feels alone. I have no doubt. But this, this was the first time I’ve ever heard him say it.

Cooper whined. He threw his kindle at the windshield. I looked at him. Did he understand what Sawyer was saying? He gave no indication that he did.

I grabbed them both in my arms and smooshed them together. There heads both resting on my tummy.

‘I know you don’t. But your brother is amazing Sawyer. There is no one else like him. And I promise you that someday you will see that. I promise.’

Without skipping a beat he responded with, ‘But mama, will the baby be like me or Cooper?’

And I answered in the most honest way that I could with, ‘I don’t know Sawyer. We will have to wait and see.’

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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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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3 Comments

  1. Lawana Penrod on July 9, 2018 at 12:46 pm

    Thank you for sharing this and all your stories with us. It’s important for us to remember that we’re not alone. We’re not the only ones that have these impossibly difficult conversations with our NT kids.



  2. Autism Mom on July 11, 2018 at 9:05 pm

    Thanks for your article, as a parent of a 15 year old daughter with autism, this article definitely strikes a cord. Have a sibling with autism definitely creates some unusual situations and questions.



  3. Lisa on September 15, 2018 at 7:10 pm

    Many of your posts resonate me, even though our autism looks different than yours. I am 23 weeks with our third, Our oldest being NT and our soon to be middle with ASD. You articulated all the fears here that I have not been able to. Yet we looked fear in the face and took this on with eyes wide open. Not many would. Thank you for the gift of sharing your journey.