My Greatest Fear As An Autism Mom

Raising a kiddo with an unknown future is tough. It takes a toll on a parent’s sanity and emotions. I have fears for my autistic son that I would never have for my typical son. And, I think it is important to say these fears out loud. When my son was diagnosed I just wanted to find someone that talked about autism realistically. I needed someone to say they were scared and that they were tired and worried. But I couldn’t find that person which in turn, made me feel even worse. I want to be that person for you. Here are my greatest fears as an autism mom.

My number one fear will always be my worry about who is going to care for my son after I am gone. My sweet boy is so vulnerable. So innocent. Who will care for him?. Who will shave him? Make sure he is warm and clothed. It’s a fine balance between preparing for the future and not jumping down the rabbit hole of constant worry. I am getting older. Cooper is getting bigger. And some day, I won’t be able to care for him anymore. And some day after that, I will be gone. Will his brother step in? It’s hard for me to think about right now.

Another fear of mine is the thought that I might never hear my sweet boys voice. I might never hear the word, ‘mom.’ The kills me. I try not to think about it. I try and tell myself that hearing ‘mom’ on his talking device is just as good. But it’s not. But it’s okay for now.

And what if I lose him? What if he wanders away and can’t call out? That fear is really real. My son is completely nonverbal. I honestly don’t know if he could even ask for help. I know he couldn’t identify himself.

But my newest fear is even more raw. It’s even harder to say out loud. Yesterday, I observed an 18 year old boy with Cerebral Palsy and his mother interact. It was the most beautiful love I have ever witnessed. And it got me thinking, What if…despite everything I’m doing…my son still never enters our world? What if we never have any of the connections moms are supposed to have with their sons? That’s a scary thought. What if I never reach him?

Listen to me ramble about my greatest fears as a mom to a little boy with severe, nonverbal autism.

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  • Christy

    November 19, 2017 at 9:35 pm
    Reply

    Thanks for your honesty and all your posts. I have a 10 year old son who is a beautiful blue eyed, blond haired boy like […] Read MoreThanks for your honesty and all your posts. I have a 10 year old son who is a beautiful blue eyed, blond haired boy like yours. He is nonverbal also. He was diagnosed at eighteen months. It's so reassuring to know that you are not alone in this Autism journey. Take care. 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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