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Finding the Right Words

By Carolyn Murray

Recently my daughter and her friend were riding in the back of my mini-van while Daniel sat in his car seat in the middle. He was busy making his Indian calls by pounding his mouth with the back of his hand going "wa-wa-wa-wa-wa" Our little visitor remarked "Daniel's too loud!" Even though she's an innocent kid who doesn't understand his limited entertainment skills, it irritated me when she said it. Of course, I often think it too, and sometimes tell him to stop and encourage him to make other sounds. Then she asked the fifty-million dollar question, "When will Daniel talk?"

I was tired, stressed from dealing with the latest crisis in my marriage, and I simply said, "I don't know." I felt defeated right then and there. I can't answer that question, and in fact, there might not be a "when" that my little boy learns to speak.
When Daniel was still in the early intervention program, probably around a year of age, one of his strengths was making lots of sounds. He was dada-ing and blowing raspberries to beat the band. We had high hopes that speech therapy would help him to eventually talk.

Now, he's four years old and essentially making those same sounds. His receptive language, or his understanding of what is said to him, is at a higher level than his expressive language skills. He doesn't know how to form the words he may want to say.

He also isn't too darned interested in other forms of communication. His fine motor skills are extremely poor. He doesn't hold a bottle or a cup without a lot of help,so sign language isn't an option right now. When presented with pictures to point to, he usually gets heavily involved with the edges of the paper.
He reaches for his water glass, though. The boy loves to drink water, and he will stretch that little arm of his across the table to get it. But when I stand before him and ask him to put his hands out for me to take him, he looks at me with that "you know I want you" look of his, sometimes bucks up and down like a bronco, and refuses to reach. Is he stubborn, lazy, or has he just learned that I'm easy?

For the most part, I am so used to Daniel just being Daniel that I don't ask certain questions anymore. Therefore, when Melody's friend asked, "When will Daniel talk?" it brought up sadness that I don't like to dwell in. How do I answer that question? My own expressive skills are lacking when I try to come up with a better answer than "I don't know."
It's not much different than when a child asks me "When will Daniel walk?" or "When is Daniel going to start eating real food?" or "Why doesn't Daniel look at me?" I can't seem to find the right words. Words that will satisfy their curiosity without sounding clinical and confusing.

My daughter is also tired of her own explanation to classmates and friends that "Daniel has a disability". What the hell does that mean, anyway? I guess it means he's not able to talk, he's not able to walk, he's not able to eat and he's not able to look us straight in the eye very often. His abilities have been dissed. But why? Without a handy diagnosis to defer to, it's tough.
Telling people that Daniel's brain is small invites more questions than it answers. Tell the truth. That's what we're taught when we're young, but as we mature we learn to tone down the truth so that it doesn't burn our tongues. How can I be honest, yet honor Daniel? What is truth and which words express it best?

In Barbara Gill's wonderful book, 'Changed by a Child', she writes:

"Labels invite people to experience the individual with a disability solely in terms of his need and dysfunction, leading to a predominant perception of helplessness. They provide a mere outline of the person, on which the listener can project his beliefs, ideas, fears, and fantasies. Categories and pigeonholes create distance, allowing others to avoid knowing and engaging the individual with a disability on his own terms. When I call my child by name and talk about him in terms of who he is, what he can do and give, and what he needs, I evoke, both for myself and for others, a real, three-dimensional person living a real life."

If I could have that conversation in the van again, I think I'd say, "He is talking to you right now. He's telling you how happy he is to be taking a ride with all of us. He can't say words yet, but he lets us know what he's feeling in different ways."

And when the need arises to "explain" my son, the clearest explanation might simply be "Daniel is different than most boys. He can't do a lot of the ordinary things like run, chase a ball, build a castle or eat a Happy Meal because his brain can't yet tell his body how to. He does like to be held and tossed in the air, to listen and move to the music, smile and laugh at the people he loves." Maybe I'll balance what he isn't able to do with what he can.

Maybe I'll find better words, and maybe I'll do better next time.


Carolyn Murray is the single mother of two young children, one with multiple disabilities. She formed the Daniel T. Murray Foundation for Children with Disabilities to help fund her online work at Daniel's Gift, a publication serving families of children with special needs. http://www.danielsgift.com
 

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