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When I was nonverbal

July 23, 2017

As most of my long term followers are aware of  I was not fully verbal until I was 10 years old, I said my first word at 6 years 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 an insight to what they may be going through to the public by sharing my experiences of when I was nonverbal.

My brain: your 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, thats it walk up to him

Me: ARRRRUGHHHHHAAA!! *falls in front of dad and begins to scream*

My brain: oh here we go again, you know what you want why cant you just say it?

Me*full blown meltdown* AAAAAAAWAAAAAAAAA! NAAAAAA NOOOO NAAAA AAAACAAAAAAAA!

MY brain: you did this the other day when you was in pain but coulndt tell your siblings so you just screamed, cried and was aggressive look he’s asking if you want food you just need to nod

Me: AAAAGHHAAAA!!! MMMMMMMMMHMMMMMMMHMMMMMM (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.

I remember my younger sister made me play barbies with her she was of course making the barbie speak with mine, she then stopped and looked annoyed but I was not making it talk she was too young to understand that I was not doing this on purpose and she was also too little to understand that despite not being able to speak I was making the doll communicate even if the things I was making it do might seem well odd. I would often 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 with as not only did it involve imaginative play which I found really hard which is why my sister would often take the lead but it also involved a lot of interaction between speech as so many kids just like my sister are brought up to only listen with their ears and to only focus on the physical voice of a memes of communication and interaction.

I also remember every time my older sister who I was very close too would tell me she loved me before she went out and 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 of it) like in a typical family it becomes a simple thing to say I love you and to get it back but when your an autism household that all changes sometimes you have to listen to us with more than your ears and I was confused for a very long time why she was so shocked and why she was so happy that she cried tears just because I said something that I have been showing her all along. Didn’t she notice when she came in the room I would jump about, happy noises, flap my hands, the way I always wanted to be held by her and how I would stock her school bag with all my favourite toys and foods. As I have grown I have come to realise that she probably knew that I loved her back and the whole actions speak louder than words but when someone is starved of something like my family was starved of my voice for so long they long for it, 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 I was connecting to her in a way which took everything in me, the words were the thing that meant the least it was the actions and the wait behind it.

Me: Eh oh, Eh oh, time tubbie byes byes tubbie byes byes eh oh, eh oh (scripting Tellietubbies)

Doctors: well it seems like she can speak fine and is just being lazy with requests

Doctors: what did you do at school today?

My brain: well you did some drawings and some math then you played outside then you had a story read. so come on tell him

Me: ”Eh oh Eh oh, we can fixs its” mix of (Tellietubbies and Bob the builder)

My brain: No peri come on if you can say that why cant 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: AAAARGAAAHAA!

My brain: oh boy….

I would script a lot but often people would think just because I could script then I could speak y own words too but this was wrong as I was pretty much just being a parrot I was just repeating the words I had heard in the exact same voice and the exact same way this is what I call being ”pre-verbal”

After a meltdown I would often lay on my siblings lap or parents while they stroked my hair and talk 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 that met the eyes, I had amazing stories to tell stories than 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 back then to my love ones if I had a  chance to tell them everything I so badly wanted to say I think it would of gone like this:

Please love ones 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 4 little words of “I love you too” I know you want me to be like other kids chatting about our favourite movies and weekend plans but please don’t cry because when you cry it makes me feel like I have failed, makes me feel like I’m failing at the one thing that could finally connect me with you…makes me feel like I have failed you. I sing a million of 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 original ears but if you just breathe in and dance with me, spin around with me me you can almost hear my song a song almost quieter than silence but even more beautiful and maybe one day I will be able to make my songs loud enough for the world to hear but if I not that’s okay because I don’t need to speak to communicate with you. On some days family I may act like I have no idea what your on about but I understand every word I’m just so tired trying to connect with you, trying so hard with your speech regims and endless word card games I’m trying so hard but I’m so tired so please listen to my songs come real close because they are just for you, where 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 to you my pain is to scream and cry, it’s like my voice is in this prision made of titanium bars which can’t get out and maybe it never will maybe stJude has my voice the saint for 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 alright..

 

Now I did speak and I’am thankful for that but really I’m more thankful in finding and improving my ways to communicate. Speaking and communication are not the same thing you can speak without cominucation and you can comminucat  without speaking and then you can use both together but it’s not always needed. Writing will always be munch first way of commucaiting as I feel like without writing I would not be able to truly communicate like I’m doing today because writing is much more than a hobby, interest, love…it’s my voice my only voice because to me a voice does not need to make a sound a it just needs to be able to express feelings, and tell a billion of storie. That is what my voice does for me and without it I will be lost….

So of course my vocal voice is helpful when telling someone I’m hungry or that I hurt or to fulfil simple requests and demands but it is not my “voice” it does not show everyone the real “Peri” and this journey has helped me realise this it has helped me to realise that all those years ago I wasn’t striving to speak, I was striving to communicate…striving to connect with the world..

 

 

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From → Autism

19 Comments
  1. Wow, this is so strong, amazing to read and you have definitely communicated a lot with this post! As mum to an autistic girl, this gives me a real insight, although I appreciate her thoughts may be different. But it just helps to open eyes, so thank you!

  2. Thank you SO much for writing and sharing this post. I’m mummy to Hannah – a little girl who has Cornelia de Lange syndrome but who also has a diagnosis of autism and is non verbal. Everyone is unique and, like Steph says, everyone’s thoughts may be different, but this gives me a much better insight….and even though she doesn’t speak, I hear her song. Beautifully written ❤

    • Thank you for your kind words, we are all different autism is such a large spectrum but if I can give anyone the smallest type of insight to themselves or their kids then I have done my job.
      I wish you and your daughter nothingbut love and joy for the future x

  3. Kristie permalink

    Thankyou thankyou thankyou
    I am a foster mum of a 5yr old boy. Im always reading and researching.
    Love your words. It keeps me going and i know im in the right track xxc

  4. Alyssa Decker permalink

    This was one of by far the most amazing blogs I have ever read. As a speech therapist working with children with autism and a wide range of disabilities, my students are beyond perfect in their own unique way. Let your voice be heard and continue to chase your dreams ! Never let anyone dull your sparkle ❤️

    • What a rewarding job that must be Alyssa I have so much respect for you.
      Thank you so much for your kind words they mean so much to me. x

  5. Lorene Crider permalink

    This is such a beautiful story my daughter is 6 and nonverbal. I’ve longed for the day I might hear “I love you” she’s also deaf. For her she’s finally starting to use some sign fluently. The first time she signed I love you I thought I’d die from the happiness I’d felt. I try my hardest to “listen” with all my senses and most days I feel like I do a pretty god job. I know how hard it is for me I can only imagine how much more difficult it has to be for her. I thank you from the bottom of my heart for sharing this with me.

  6. Tiffany permalink

    Thank you for writing this. I am wiping tears from my eyes as I imagine my son thinking similar thoughts and experiencing similar frustrations.
    He babbles incoherently but I see in his eyes that he is truly saying so much to us. I just wish we knew his language…
    This was so beautiful. Thank you for providing this hope. ❤️ God bless you and your family ❤️

  7. Raymond permalink

    Can’t thank you enough for sharing!!! I am a father of a non-verbal little girl that is slowly coming out of her shell. I just want to thank you again for making me see things in her prospective.

  8. Iman permalink

    Wow what a story I cray because I have a grandson who have autism and his my is deaf she spoke when she was 7 now I tray to talk to him is hart to see him he want to say something but we don’t understand him my god please u u help me now to u
    Have patience with him and thank you for sharing u story here

  9. Balo permalink

    Wow, its amazing to read this , my 4yr boy of autistic does not speak and sometimes i wish he can speak, also i can see he loves me because every time i came home from work he runs and jumps around, i cant wait to start communicating with him, thank you once again for opening my eyes.

  10. Clarinda permalink

    I have a non verbal son he is 4.and when i read this i cried.i see the communication in my sons eyes,in the love.it is very hard.and u are so blessed.i am in need of help to understand my son.because his father is in complete denial.i try and i try but i am not a expert.coming from a home with no love,guidance.it is so hard.your article has helped me to please understand dont lose patience.i will not give up.i can only try harder for my precious son.thank u for sharing❤

    • Clarinda thank you so much for your reply it means so much to me. I have a page on Facebook called NotRainGirl where I also share my journey with autism, I can also message me on there if you need some support or questions answered. I will gladly answer you. I’m sorry about the hardships you are facing but believe me when I say it will get better! 💙

  11. It’s great to hear an autistic voice giving an account for once. I’ve always maintained that speech is just one small part of communication, and that as adults/parents/carers/friends it is our job to look behind the words, or lack of them, and search for the meanings.

    All my children are considered verbal, but I know that especially with my youngest, what she says and what she means may be two very different things, especially if she is stressed, so we always try to encourage her to use other ways to communicate. I would go as far as to say that her first language is pictures, and to that end we’ve pulled her out of school as they refused to accept her need to think and learn this way.

    I’m now following your blog, and thank you so much for writing this.

  12. sonia permalink

    Wonderfully insightful writing and your struggle and hard work shines through.Keep writing keep bringing us into your world x

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