December 4, 2025
I Wish Someone Had Prepared Me For All Of This
When my son’s autism was discovered twelve years ago, I wasn’t ready to think about the future.
Nope.
I focused solely on the present and helping him. And it wasn’t easy. It wasn’t like help just rolled in. I learned quickly there is no prescription for autism. Instead, it was trial and error. And a whole lot of advocating (fighting) for services and supports. But hard work paid off. And he was worth every bit of the hard.
When he turned 8, I was ready to dip my toe into learning about forever. See, for me, it was a process. I was scared of acceptance in a way. Because, accepting that my son may never talk, work, live independently, drive, etc., well, it felt sad. And scary. And a little bit like giving up.
But, I learned, that I was wrong. It wasn’t giving up. It was looking at life differently. It was saying goodbye to expectations. It was focusing on joy and happiness.
And slowly, acceptance has come. To me, it’s been like a breath of fresh air. A weight lifted. Peace.
But life has a way of happening too. My son is 14. He is a teen. In a few days he will be 15. Then 18. And then a man. And the realities of growing up differently have washed over me. The gifts not bestowed on him. Like waves. Same fast and hard. Leveling me. Some slow and gentle. Like waking up.
I’ve learned his peers will get their drivers licenses.
I’ve learned one day his babysitters will be younger than him.
I’ve learned that his nieces and nephews may someday surpass him in certain areas.
I’ve learned college applications will come.
And his siblings will move out.
These are certainties. I know because other parents have prepared me. They tell me about their waves. And how they got knocked down even though they know it’s coming. But today, something new leveled me. Three sentences. Out of the blue. I overheard it.
A giant wave. A tsunami.
I heard a man say to his wife…’I need to call mom. She’s not feeling well. I want to make sure I call today.’
I felt like I couldn’t breathe for a second. I looked at my son. He cannot speak. He doesn’t realize when others are sick.
I don’t know if he will ever call me on the phone. I don’t know if we will ever have a conversation. I don’t know if he will ever check on me.
I don’t know why that hit me so hard. But it stopped me fast. And left me wondering and hoping.
I am preparing. And celebrating a life differently lived. But I am not spared from the sting all the time.
Today, the wave was huge. And for a brief second, I drowned.
It’s been hours since it I heard it. And now I am breathing fine. But the damage has been done. I am processing now. And trying to be okay.
I wish someone had prepared me for all of this.
The worry. The fear of forever. The agonizing pain over leaving him someday.
So, I am sharing it with you. In hopes that I help one person feel less alone.
That’s my hope.
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.
