Tuesday, June 5, 2018

If My Daughter Could Really Talk

My daughter's communication skills have grown exponentially over the past 4 years. For 8-9 years, she was nonverbal. We first communicated with sign language and other nonverbal methods. Later, she used her communication device to expand her vocabulary and "talk" about more subjects. Then, much later than expected, she started trying to talk more and more.

Now at 12 years old, Jaycee's verbal speech continues to increase. There are some words she can say very clearly like mom, dad, bye-bye, hi, yes, and papa. I love these words. They are precious.

Some words are missing consonant sounds or have the wrong consonant. Some great examples of these words are:  Pi-a (pizza), hickles (pickles), ip-ops (flip-flops), goo- -ob- bubba (good job bubba), eh-he (spaghetti). As her mom and a pediatric speech-language pathologist, I have come to understand her speech patterns and know what she is saying most of the time. I'm happy she's attempting to talk after years of silence.
Because of Jaycee's speech and language delays, we do a total communication approach. She can sign, use her communication device, speak, or gesture to communicate. Still, it's not like I can converse with her about anything and everything. There are some things she literally cannot say.

Similarly, there are some topics that I don't know if she understands. She has an Intellectual Disability, which affects how learns, remembers, and comprehends. This, too, impacts our ability to communicate. I try to simplify my speech for her, but it's hard to really know what she knows at times. With my son, he can ask questions to clarify or offer his own thoughts. This doesn't happen with Jaycee.

If, for a moment, my daughter could really talk like any other 12 year old, this is what I would ask her:

-I've told you that you are going to a new school in the fall. Do you have any questions or thoughts about that?

-What do you really enjoy doing besides watching movies and listening to music? What hobbies would you be interested in trying?

-Do you hate doing your medicine everyday?

-How does it feel to wear your bi-pap at night?

-What happens during a school day that you like? That you don't like?

-Sometimes you get really scared when we go to the hospital for a regular appointment. What are you thinking about? What scares you about it? How can I help you in the future?

-Sometimes you sit down and refuse to move when you walk for awhile. What's really going on when you do that? Does something hurt? Are you just tired? How can I help you?

-What do you really enjoy doing with me?

These are some questions that I would really love to have answered. I want to know more about what my daughter understands, thinks, fears, and feels. Maybe one day she'll have the ability to do it. Until then, I am grateful for the things she can express, and I'll keep interpreting her behavior as best I can.

After all, there was a time when I thought I'd never hear the word "mom." Now, she says it in several different tones all with their own meaning. Perhaps, one day these answers will come too. A mom can hope...

No comments:

Post a Comment

submit to reddit