The Worst Thing

It’s been nearly 4 years since NinjaGirl was diagnosed as autistic. I can’t really describe what it was like back then, because it felt like there was so much happening at the time _ we were very busy with small children, I was still dealing with severe PND, we were massively sleep deprived and trying to look like we were coping.

Then NinjaGirl was diagnosed, and while it was no surprise to us, it still threw me into a flurry. What did it mean? What did the future hold? What would life be like for her, being autistic? What would like be like for us? What did it all mean?

I can’t tell you the amount of time I spent reading online. It was a lot. We hadn’t had much advice in the “what to expect” form from any of the professionals we had spoken to. I didn’t know much about autism or being autistic. I didn’t know where to look for information.

And I was afraid.

I wasn’t afraid that our life would be over. I wasn’t afraid that NinjaGirl, who was 2 1/2 at the time, would never grow or change. I wasn’t afraid that she would flap a lot, or always live at home, or never sleep through the night.

I was afraid she would never talk.

To me, that was the worst thing. That she would never be able to talk. Not because I wanted to talk with with her, or because I wanted hear her say certain things to me. I was afraid because I didn’t know how she would be able to communicate with other people. How she would be able to go shopping, or buy a book, or order a drink. How she would be able to tell a doctor if she was hurting. It was my biggest fear.

We had well meaning people say “I’m sure she will start talking any time now.” And “don’t worry, I bet she’ll be talking by the time she is 5′ and ‘it will happen, I know it will.” I read stories written by parents about how their child went from non speaking to speaking seemingly overnight. And still I was afraid for what it might mean for my daughter to be non speaking in a speaking world.

Then someone shared a post on my Facebook feed. I can’t even remember who, but I’m so grateful they did. It was an article written on the Ollibean website, and it was by Amy Sequenzia, and my world bloomed. Suddenly I was finding beautiful, passionate words written…right there, in front of me, by someone who was non speaking. I read these beautiful words, and I felt ashamed for holding on to my fear. For thinking that the worst thing could be a child who doesn’t speak.

I kept reading. I read about ableism. Neurodiversity. Acceptance. I read words written via AAC, via letterboards, via RPM. I prioritised the voices of non speaking autistics, and looked to them to gain a better understanding of something I couldn’t experience in the same way. And then I looked to my daughter. Looked to what she was showing me, if I would just let go of my fear, and my bias, and pay attention. I listened to what she said to me.

Now the thing I worry about, the worst thing, is not a child who does not talk.

The worst thing would be me not listening.

Image has the text, "I read these beautiful words, and I felt ashamed for holding on to my fear. For thinking that the worst thing could be a child who doesn't speak. Naomi, FB/RespectfullyConnected." Background is pink with a pink speech bubble containing a heart.

Image has the text, “I read these beautiful words, and I felt ashamed for holding on to my fear. For thinking that the worst thing could be a child who doesn’t speak. Naomi, FB/RespectfullyConnected.” Background is pink with a pink speech bubble containing a heart.

1 reply
  1. Vicky
    Vicky says:

    Naomi — this is so beautiful, and such a true reflection of my own story and feelings that I burst into tears on the last line. Thank you for sharing. xoxo

    Reply

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