His Voice

Seven years ago, I wrote a lot about Nicholas for Autism Awareness month. He was 5 years old at that time. Here are some excerpts I wrote about him being Non-Verbal:

“He has Autism, he doesn’t talk yet.” I find myself saying this rather often nowadays. When he was younger I was able to answer for him and strangers would accept this. Now that he is bigger I have to explain why he doesn’t say, “I’m 5, Thank you, Trick or Treat.”

What would Nicky say? I wonder this all the time. What is going on in his little mind? I have already mentioned that he is “non-verbal”. As is the case with many children with Autism, he began with a few words from 9 months – 14 months of age. He could say, “Momma, Dada, Papa, Nana, Bye Bye” then out of nowhere his words were taken away from him.”

He has only had one word that has stuck with him consistently and that is “Momma”. Thank you God!

Written in April 2014 to describe Nicholas

It is now 2021, and 7 years have passed since I wrote those things. Still with all the speech therapies he has received – his only consistent word remains “Momma”. To that I still say THANK YOU GOD.

You may think, well that’s something and YES IT IS SOMETHING…. However, he does NOT say Momma on a daily basis. He does not call my name out from the other room. He mainly says it when he has physical pain and is hurting.

The word Momma gets spit out when he stubs his toe or gets stung by a bee. I could sit in front of him all day and ask him to say Momma, he may be able to say it a few times, but it is not “on demand” or “at will” for him. It is not easy for him to blurt it out.

SO HOW DO WE COMMUNICATE? – IN MANY DIFFERENT WAYS

  • We are currently using Proloquo which is an App that allows him to point to pictures arranged in folders on his iPad. He CAN communicate in this manner, but he is unmotivated to do so.
  • He is physically able to do things some children with Autism cannot do. His gross motor skills have never been a problem. Opening a refrigerator or freezer and getting out what he wants – NOT A PROBLEM. (Not being allowed to have what he wants – PROBLEM)
  • My daughter started her own version of sign language with him. She holds out her hands and tells him to tap one, explaining the hand to his left means no and her other hand on his right means yes. He enjoys communicating with her and I enjoy watching.
  • He has a DECENT head nod for Yes or NO. It’s a weak postured head nod, but he can do it. 99% of the time I feel he answers correctly, versus trying to just move his head because he knows we are looking for movement.

WILL HE EVER TALK?

7 years ago I would tell people, “He has Autism, he doesn’t talk YET.” Now I find myself saying, “He has Autism, he is Non-Verbal and doesn’t talk.”

Somewhere over the years I grieved the loss of his voice along with all of the other hopes I had for him. While it is still possible, the goal NOW IS COMMUNICATION – not necessarily talking. Of course I would love to hear his words, but the most important thing is communication in any form.

No matter how old he gets, as long as I am around I have no problem being your voice MY BIG LITTLE GUY

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