This is a blog post about raising a child with nonverbal autism, written by guest blogger, Toni Williams.
Nonverbal autism: “Ethan, can you hear me?”
When I look at my son, I see a perfect little boy. He’s kind and funny and has the biggest personality despite being nonverbal, severely autistic, and riddled with developmental delays.
When I tell him I love him, often he will look at me and smile.
When I ask him for a hug, sometimes he will give one to me.
When we are playing a made-up game, that’s never traditional, I see glimpses of a typical boy and he has such a bright light in his eyes.
It’s when he doesn’t smile when I tell him I love him. Or when he doesn’t hug me when I ask him for one, that I wonder Ethan, can you hear me?
Nonverbal autism: A feeling of loss
I’ve dealt with a lot of feelings of loss when it comes to my son’s autism. He’s such an incredible child but it’s hard not to think of what he could have done with all that incredibleness and what he could have accomplished had he not been autistic.
For example, despite Ethan’s lack of gross motor skills, he has a lot of talent with a basketball. He’s able to dribble it while running and throw it from one hand to the next with ease, honestly, he impresses me. All self-taught by the way.
Never giving up hope
I never give up hope for his future but right now he has no idea that basketball is even a game. Given his severe developmental delays, the concept is just too big for him. But how amazing would it be if he had no delays? I’d like to think that he’d be well on his way to playing in the NBA. This is something that has been a struggle for me but for my husband it’s been even harder to accept. See my post on Mourning the loss of what could have been. If I’m being honest, my husband feels like our son has gotten cheated out of his life and I’ve felt helpless in my inability to console him.
What can you say to a person who is right? Ethan did get cheated, and so did we. The unfairness is disheartening and I’m not sure if I can truly convey how much this hurts. It makes you question your faith because never ever should this be. For anyone.
We need to acknowledge all feelings associated with raising a child with nonverbal autism
There are times when I am flooded with this emotion. Right now, is one of those times. I am being as honest as I possibly can because I know that I’m not alone out there. I think it’s essential to speak the truth because there is not enough of that. Otherwise, we wouldn’t feel so alone. So isolated.
It’s okay to feel this way and still think my son is perfect because they are not exclusive. Today I’m overwhelmed with this feeling, and I remind myself that it’s okay. No child should ever have anything as hindering, it’s ok to feel like this because it is so unjust.
Tomorrow, I will remind myself how lucky I am to have such an amazing boy.
I will look at him with pride for how far he’s come and how lucky I am to be his mother. He teaches me every day and reminds me of what’s good in this life.
Ethan has completely changed my life and made me a better human. Although there are times when I may feel the latter, I think that it’s okay. I think it’s important to feel it so that I can release it. Releasing it always brings me back to the question, Ethan, can you hear me?…. Yes, yes, you do, and even though you speak no words my love I, will always, hear you too.
I would love to speak to anyone who understands and can relate to how this feels. Does anyone else feel this way?
Toni Williams’ Biography
Toni is a mother to a wonderful 11-year-old boy named Ethan. Ethan is autistic, nonverbal, and has severe developmental delays. She’s not a doctor or an expert, just a mom who is in your situation and can
understand how overwhelming all of this can be. She’s done a lot of research and spent countless hours educating herself. She has all this information inside of her and feels compelled to help and share it on her blog, The Light in Autism
MariaMakula2022-08-07 at 3:43 AM
Loved this latest blog Toni.
Trisha2022-12-29 at 8:27 PM
I feel this completely