“A few days ago, my middle son Sawyer and I took a drive to meet Grandma and Grandpa.
They had the baby overnight so this mama could finally sleep through the night.
It was delightful. I slept 12 hours.
Anyhow, the drive was just under 45 minutes which means 45 minutes that I get to hear about Pokémon cards, hockey, school and life from a six year old.
And I love every second of it. This last year has went so fast. I feel like Sawyer grew up overnight, already thinking friends are cooler than mom.
So, anytime I can get, I soak up.
We made a quick stop at Starbucks to grab some treats and we were on our way.
As a mom to three boys, one with special needs, I try very hard to find balance in life. And I don’t mean just for me. But for my children as well.
I want my middle son to have as typical of a life as possible. I want him to have sports, friends, playdates, and birthday parties.
I also want him to be able to talk openly and honestly about having a brother with a disability. Because I will never know what that feels like.
I don’t want him ever to be ashamed to ask questions. Or to wonder why. Or especially to say that it can be hard sometimes.
I want Sawyer to grow up understanding differences and embracing them. Not trying to overcome his childhood.
So, about ten minutes into the drive, I asked him if he had any questions about autism. About his brother. It was as simple as that. I opened the door.
He went on to tell me a story about an autistic boy that was in his class. He told me the boy is different than Cooper because he can speak. He told me how they used to sit by each other at lunch and had so much fun together.
He told me that the little boy sounded like a robot when he talked. But not in a bad way. Just different than the other kids.
After a bit of silence he said, ‘I have one question mama.’
‘Okay. What is it?’ I asked.
He let out a big sigh and said, ‘I feel funny asking. But does Autism last forever? Like um, well…will he have it when we are old? And in heaven?’
I didn’t answer right away. I knew what he was getting at but I wanted to hear more. I feel like so often in difficult conversations we speak just to speak. To fill the air.
This time I wasn’t going to do that. I wanted to listen.
He went onto say, ‘Because I was just wondering. I know he’s always had it. I remember when I was little mama and Cooper had it. I couldn’t figure him out. I used to think he was from a different planet because he screamed all the time and had his own words. Don’t be mad mama. I just couldn’t figure it out.’
‘I’m not mad bud.’
‘I just wish sometimes it would go away. So we could talk. And I wonder if we will be able to talk when we are older?’
He waited for me to answer. I know he wanted me to say it would get better. That someday, when they are teenagers they will be able to talk. But I couldn’t. I don’t know the answer to that question. No one does.
‘Yeah bud. It lasts forever. But he’s getting better. You know that. He can almost say your name. Don’t you think it’s getting better?’
I watched him in my rear view mirror. I could tell the wheels were turning.
‘But maybe in heaven right mama? He’ll maybe be able to talk in heaven?’
Now we all have different beliefs. And I will never push mine on another person. That’s just not who I am.
But a few years ago, after my dad saw the intensity and severity of Cooper’s autism, he said to me through tears, ‘He will be able to talk in heaven Katie. There will be no pain there.’
I’ve never forgotten that. It’s a memory that is burned in my brain and heart.
So I responded with, ‘Yeah baby, he will talk to you in heaven.’
I need to believe that. And I guess so does Sawyer.
That there was one of the most beautiful, emotional, honest, and pure conversations I have ever had about autism and it’s impact on siblings.
Parents, start the conversation. Ask the question. And then just listen.”
This story was submitted to Love What Matters by KT Swenson. You can follow her journey on Facebook and Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
Read more from KT:
‘I whipped around fast. ‘You leave him ALONE.’ He covered his ears, flapping his arms. The man snickered under his breath.’: 70-year-old woman thanks special needs mom for opening her eyes to autism, ‘You taught me patience and kindness’
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