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Raising a child who is mostly nonverbal can prove challenging for parents, to say the very least, and especially when that child is cognitive of everything being said around him.

This week in Special Needs Living, CafeMom aurorabunny, mom to 3-year old Brody, who has autism, discusses her struggle to continually find new ways of communicating without words and to hold onto hope for progress to come.

Learning to Communicate

by aurorabunny

Today at Brody's school, one of his teachers approached us about the possibility of obtaining a "touch and talk" type device for Brody to start using. I have seen just a few other children using these devices before, and they have always intrigued me, but at the same time I figured they were ungodly expensive and didn't research them any further. (I was right about the ungodly expensive part — they are.) While I'm still not very educated on what Zach and I have been referring to as "the autism talky box thingy," it seems like the basic concept is almost like a computer that Brody would be able to use to speak for him and therefore serve as another tool for communicating and making sure that he has a way to express his wants and needs.

I was all excited over this idea earlier today, but I have to admit that a little bit of sadness has hit me after throwing the idea around in my brain all day long. I'm grappling with questions now, like wondering if this is an indication that Brody's teachers don't think he is any closer to being able to speak for himself. His speech is definitely an area where I've been holding out as much hope as possible, but I would be lying if I said that I don't feel that hope dwindling sometimes.

I was thrilled when Brody began making letter sounds and became able to say simple words like "Mama," "Dada," and "yes" about a year ago. But it seems like there hasn't been much progress since then, despite our continued efforts. Brody can make almost any letter sound when prompted, and he's great at sounding out words; however, prompting seems to be the only way to get those sounds out of him. He doesn't ever use them independently to communicate, and we've been trying to understand him as best we can with a combination of pointing, ASL (American sign language) and PECS (Picture Exchange Communication System) cards. As thankful as I am for any level of communication, I'm growing frustrated that my little guy still doesn't hardly have any verbal speech.

Sometimes when I allow my self to dwell on this subject, it makes me very sad. I marvel at how Brody can be such a happy child when I think about the level of frustration that he must feel some days. Especially considering that his receptive language is off the charts; he shows through his behavior and his actions that he understands pretty much everything that we say. Imagine sitting in a room full of people, understanding every conversation around you, yet being able to communicate nothing back no matter how badly you want to.  Imagine living your whole life that way. That thought brings me down no matter how optimistically I try to look at it.

There are times when I feel he has really made strides in communicating with me, and I know that he has. He's come a long way from the little boy who wouldn't even acknowledge that I existed. Other times I feel a lump in my throat and have to hold back tears when my son is trying to tell me something that I just can't find a way to understand. Just today in the car, I think he was trying to show me something that he saw outside his window. He just kept looking at me and saying "Dat? Dat? Dat?" I know that he wanted me to acknowledge whatever it was that he was seeing and share it with him; I kept making guesses, but it broke my heart when he looked away finally with a look on his face that seemed to say, "I give up, I guess you don't see it."

I can see already from the road that we have traveled that Brody's path to verbal communication is going to be a tricky one, if it ever comes to fruition at all. In the meantime, I suppose we will add the "autism talky box thingy" to our arsenal of things that we hope might help. More than that, I know I need to hang on to my optimism. If nothing else, it fuels me every day to keep learning new ways of communication for MYSELF. If Brody can't verbally express himself to me, then it's my job to keep learning new and different ways to listen. Learning the art of communicating without words is such a challenge for those of us who have never really known any other way, but like Brody, I'll just keep doing the best that I can every day. 

Has your child, special needs or otherwise, taught you new ways of communicating? 

 

Previous Special Needs Living posts from aurorabunny:

Thinking About TTC a Second Child: Special Needs Living

Autism Insurance Reform: Special Needs Living

5 Tips for Special Needs Gift-Buying: Special Needs Living

Balancing Playtime & Therapy Time: Special Needs Living