Nonverbal Autism
I say the words ‘nonverbal autism’ daily. Cooper isn’t just autistic…he is nonverbal. It adds another layer. A really difficult layer. It adds severe frustration. It adds yelling and screaming and sometimes scary, loud noises. It adds a lot of head hitting. And mostly it removes a lot of layers of simple every day interactions.
I will spend minutes staring at Cooper and wonder what he is thinking. Wondering if he is happy. Wondering what he would say to me if he could. Wondering if he understands me.
Talking devices aren’t covered under health insurance and they cost right around $5000. Before Cooper I had no idea how something like this could change a families life. Now I see it in the same category as glasses or hearing aids.
I watched this video and cried like a baby at work. I simply can’t imagine what life would be like if Cooper could truly communicate with me.
https://youtu.be/UTx12y42Xv4
Hi Cooper’s mom.
I am Yoris’s mother. Yoris is a beautiful tall, slim, blond (curly) young man. We tried speaking devices and we got frustrated as it was not for Yoris. He is nonverbal and quite smart. Compared to his age group (he is 23) he is developmentally delayed, but he understands about everything we say to him when it is not abstract and too high a level. He has shown to be incredible when it comes to understanding others’ emotions. This is something Baron Cohen and all the professionals (in particular Leo Kanner) got wrong. There are many individuals Dx’d with Autism (and ASD), who score high in emotional intelligence if there was a test based on observation only.
I know it would be great if Cooper could talk, but I feel that Yoris talks to us with some sign language, when following what we are asking, he talks with his eyes and his gentle and sweet nature when he hugs me or gently touches my face.
From a mother who was devastated by the diagnosis of autism, when he was not yet 2 years old, I changed to a mother who is very grateful to have Yoris in our life. This morning I asked him to feed the cat (Sarah) and he smiled and got the little can, a small fork and Sarah/s bowl and he scooped the food into the bowl and gave it to Sarah. When he sees me unloading the dishwasher and he is not busy with his music or movies, he helps me and puts everything meticulously in its place.
Yoris made me a better person and a better professional (I have a PhD in psychology).
I spot kids and adults with autism from miles away and always want to make eye contact with their parents to tell them that it all will get better and that they are blessed. I know you might not feel that now after a sleepless night and after the sounds of Cooper buzzing in your ears even when he is quiet. I have been there and it is still at times there, but way less.
I hope you get funding for a speaking device, but even if you have one and it is disappointing, think about all the other ways you can communicate with Cooper.
Love
Yoris’s mom
Your story is wonderful! Thank you for sharing! Yoris sounds absolutely wonderful!
*hugs* iPads are amazing as ACC devices. Is Fraser (I think that’s the name) are they able to help teach Cooper how to use an iPad for speech/communication ? Is there an Autism team at school? I know this is a lot to take in. I also remember how it feels to just want your son to speak. I also remember the first time my son pointed at the “I want” strip and then took my hand to what he wanted. If you ever have any questions or want to vent please feel free to contact me.
Hey! Yup. Cooper has the MOST amazing speech therapist. She helped us get the IPad and he uses it daily at Fraser. At home he acts super silly with it and even pretends to not know how to use it. Such a little stinker. But at school he can do 6 word sentences! And once he said, ‘hi mom…I love you.’ Holy tears!
That’s fantastic!!! Good news he had great support. I know it’s not his speaking voice…. but it is Cooper:) right now building up the language first which is so huge and interactions. I’ve met autistic kids that can speak and can read the words on the page but they don’t understand what they’re reading and they don’t understand what they are saying. Those parents feel frustrated because they don’t feel like they’re communicating at all and they don’t think that they are relating to their children either. In the end it is all frustrating but try to live and enjoy all those little victories because when you line up all those little victories they are big from afar. Hugs
You wrote recently that you were looking at getting into writing about everything again….what to share etc…how about sharing the wonderful success Cooper is having at Fraser with 6 word sentences! Everyone would love to hear about this.
I cried too. I hope they can find a way to bring out cooper’s voice. Hugs and prayers.
Non-verbal does not mean non-able-to-communicate. As parents we know that. Too bad the insurance world doesn’t get it. I totally agree with you that communication devices should be covered by insurance. But there are simpler/less advanced/way cheaper devices that can be just as effective. Don’t give up because one type of mechanism may be out of reach right now.
I wept the first time I watched that video. So powerful.
We have the Proloquo 2 go on our Ipad. Its a bit pricey (I think $200) but they do occasionally have specials and we got it for around $100.
Cooper uses that software too! It’s wonderful.