What’s it like to be Nonverbal…

I am so excited and honored to introduce you to Peri of Not Raingirl. I have been following Peri for quite some time and trying to learn everything I can from her. Not only is she amazing herself, I know that she can help me be a better mom to Cooper.

Take a read as she describes what it feels like to be nonverbal.

Peri’s Story

I was not fully verbal until I was 10 years old. I said my first word at 6 years old, but stopped saying much else until I was 10.

I can still remember my time being nonverbal and preverbal very clearly.

I remember the pure frustration and isolation I felt not just around me but within myself as well.

I feel like I need to give the people who are still struggling with their voices a voice, and give the public insight as to what they may be going through by sharing my experiences of when I was nonverbal.

My brain: “You’re hungry, you need to ask for some food.”

Me: …

My brain: “Come on, just say ‘Dad, I’m hungry.’ He’s right over there.”

Me: …

My brain: “Come on, that’s it, walk up to him.”

Me: “Aaaaaaruuuaaaa!” Falls in front of dad and begins to scream.

My brain: “Oh here we go again, you know what you want, why can’t you just say it?”

Me: full blown meltdown “Aaaaaaa! Noooooo! Aaaaaaaaaah!”

My brain: “You did this the other day when you were in pain, but couldn’t tell your siblings so you just screamed, cried and were aggressive. Look, he’s asking if you want food, you just need to nod.”

Me: “Aaaaaaghhhhaaa! Hmmmmmm!” Loud humming.

My brain: “Too far gone, I suppose.”

This is how most days went when I needed something like food.

I knew exactly what the problem was, but was unable to express my wants, needs or feelings, which resulted in frustration and meltdowns.

Playing Barbies

I remember my younger sister made me play Barbie’s with her. She was of course making the Barbie speak with mine, but got annoyed because I was not making it talk.

She was too young to understand I was not doing this on purpose, and despite not being able to speak, I was making the doll communicate — even if the things I was making it do might seem odd.

I would undress the dolls, as my sister would often say it was a hot day in the world of Barbies. I would make the doll jump around happily, or I would move it wildly if it was suppose to be feeling a negative feeling.

I would find this activity hard to join in — not only did it involve imaginative play, which I found really hard, but it also involved a lot of interactions using speech.

Many kids, including my sister, are brought up to only listen with their ears and to focus on the voice as a means of communication and interaction.

I also remember every time my older sister, whom I was very close to, would tell me she loved me. I would just seem oblivious to her and the world around me, until one day when I gained my voice I said “I love you too.”

She cried so much — happy tears, I’m sure.

I Love You Too

In a typical family it may be a simple thing to say “I love you” and to get it back, but when there’s someone with autism in your household, that may change. Sometimes you have to listen to us with more than your ears.

I was confused for a long time — why was she so shocked and happy that she cried tears just because I said something I have been showing her all along?

Didn’t she notice when she came in the room I would jump about, make happy noises and flap my hands?

Did she see the way I always wanted to be held by her and how I would stock her school bag with all my favorite toys and foods?

As I have grown I have come to realize she probably knew I loved her back and that actions speak louder than words, but when someone is starved of something like my family was starved of my voice for so long, they dream of it; they need it to confirm things.

When I said I loved her I was not just telling her I loved her, I was letting her into my world.

Pre-Verbal Scripting

I was connecting to her in a way which took everything in me. The words were the part that meant the least; it was about the actions and the wait behind it.

Me: “Eh oh, Eh oh, time tubbie byes byes tubbie byes byes eh oh, eh oh.” Imitating Teletubbies.

Doctors: “It seems like she can speak fine, and is just being lazy with requests.”

Doctors: “What did you do at school today?”

My brain: “You did some drawings and some math. Then you played outside and read a story. So come on, tell him.”

Me: “Eh oh eh oh, we can fix it,” — a mix of “Teletubbies” and “Bob the Builder.”

My brain: “Peri, come on, if you can say that, why can’t you say your own words?”

Doctor: “Peri? What did you do at school today? Did you do some drawings?

Me: Nods.

Doctor: “What did you draw?”

Me: …

Doctor: “Peri?”

Me: Aaaaarghhhhaaaa!

My brain: “Oh boy…”

I would script a lot, but often people would think just because I could script, I could speak my own words too. But this was wrong, as I was pretty much just being a parrot, repeating the words I had heard in the exact same voice and the exact same way.

This is what I call being “pre-verbal.”

Amazing Stories to Tell

After a meltdown I would often lay on my sibling’s lap or parents’ while they stroked my hair and talked about how they wished they could see what was going on in that head of mine.

Oh how I wanted to tell them.

Oh, how badly I wanted to scream from the rooftops who I truly was, because there was so much more than just this silent girl. There was so much more than met the eyes.

I had amazing stories to tell — stories that had never been heard before, stories that would change the world. Stories that would likely be trapped in my head forever.

If I had the chance to express my feelings to my loved ones back then; if I had a chance to tell them everything I so badly wanted to say, I think it would have gone like this:

Please don’t cry.

I know you are scared for me. I know you feel my frustration.

I know you just want to hear my voice say those four little words — “I love you too.” I know you want me to be like other kids, chatting about our favorite movies and weekend plans.

But please don’t cry, because when you cry it makes me feel like I have failed. It makes me feel like I’m failing at the one thing that could finally connect me with you.

Please don’t Cry

I sing a million songs and dance to my own melody, but my songs are just too precious and delicate to be heard by the world.

They are too sensitive to be heard by ears. But if you just breathe in and dance with me, spin around with me, you can almost hear my song — quieter than silence but even more beautiful.

Maybe one day I will be able to make my songs loud enough for the world to hear, but if not that’s OK, because I don’t need to speak to communicate with you.

On some days I may act like I have no idea what you’re on about, but I understand every word. I’m just so tired, trying to connect with you — trying so hard with your speech regimes and endless word card games.

I’m trying so hard, but I’m tired, so please listen to my songs. Come real close because they are just for you.

Talking can be for anybody — anyone can talk to anyone — but you see, these silent songs are just for you, because I love you. The only way I can express my pain is to scream and cry; it’s like my voice is in a prison made of titanium bars.

It can’t get out and maybe it never will. Maybe St. Jude has my voice — the patron saint of lost causes, because that’s what the doctors call me, right? I can’t express to you what I’m going through, but please don’t give up on me.

Talk to me

Play with me, give me patience.

Don’t cry, don’t get angry — I’m trying. I know you love me and one day I will speak to you, even if it’s not with my voice. Until then, we will be all right.

I did eventually speak and I’m thankful for that, but really I’m more thankful for finding and improving my ways to communicate.

Speaking and communication are not the same thing.

You can speak without communicating, and you can communicate without speaking.

Writing will always be my first way of communicating as I feel like without writing I would not be able to express myself like I’m doing today. Writing is much more than a hobby, interest or love… it’s my voice, my only voice.

To me, a voice does not need to make a sound — it just needs to be able to express feelings, and tell a billion stories. That is what my writing does for me and without it I would be lost.

Of course my vocal voice is helpful when telling someone I’m hungry or that I hurt, or to fulfill simple requests and demands. But it is not my “voice.” It does not show everyone the real Peri.

This journey has helped me to realize that all those years ago I wasn’t striving to speak, I was striving to communicate — to connect with the world.

Here I am.

Written by, Peri of Not Raingirl

My name is Peri-Ann but a lot of people call me Peri. I’m one of 11 and I also have “Autism.” I have been told that my writing can change the world so please come to my blog, Girl With Autism Blog, or on Facebook at Not Raingirl, and have a chance to visit my confusing yet beautiful world.

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