It’s Okay To Not Be Okay

I know a lot of friends are waiting to hear about our day at the Mayo Clinic. I have so much to say. And tomorrow I will do a video. But tonight I am sad. And I’m just going to be sad for a while. Autism is so unbelievably hard. Some part of me always believed that this was going to get better. I thought maybe, just maybe, someday, he’d snap out of it. He’d start talking. He’d tell me about his day. He’d call me mom. I thought someday maybe, just maybe, we’d walk down a street together holding hands. And after today it feels like it’s not going to happen.

As Cooper ran, rolled, hit his head, refused to participate and try, lined up chairs and screamed, I heard things like…three words by age five is what matters. And don’t even think about having another baby until you meet with genetics. And this is severe autism. It is what it is. You need to trust the therapy.

My heart broke again. For the millionth time hope and reality got me.

Tonight, I need to put those maybe somedays aside and just be sad. I need to hate autism and everything it stole from us and I need to sit in the dark. I need to dwell in how this isn’t fair. I need to think about a realistic forever. And that’s okay.

Right now I know my beautiful seven year old is waiting for me outside the bathroom door. I can hear Thomas singing. I can hear him flapping and squealing. Every few minutes he knocks to remind me he’s waiting. I am his whole world. And tonight I’m not okay.

I will update tomorrow friends.


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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  • Will

    January 9, 2018 at 10:02 pm
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    At times like this I think of my mantra from the little prince. That which essential is invisible to the eye. To see rightly you […] Read MoreAt times like this I think of my mantra from the little prince. That which essential is invisible to the eye. To see rightly you must look with your heart. Read Less

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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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