When your child doesn't speak

A few weeks ago, my niece AJ tried on Jaycee's glasses. "I'm Jaycee," she said. AJ is about 9 months younger than Jaycee.

"OK," I said "You can be Jaycee and Joel can be Elijah." We role played a few minutes. When AJ started to speak, I stopped her. "Jaycee doesn't really talk remember." I decided this would be a great teaching moment.

She shook her head and covered her mouth. AJ loves to talk, so this was a challenge! After a few minutes, she said "Being Jaycee is hard."  Bingo!

Jaycee is 6 years old but can only say about 10 words. Most of them are simple words like "papa" or "mama." Problems associated with Down syndrome cause delayed language. Jaycee's language is considered really delayed even for Down syndrome. She has an additional problem called childhood apraxia of speech. The neural pathways from her brain to her mouth are not strong. She desires to speak but it is extremely difficult for her mouth to produce speech like any other kids. If you think about how complex producing speech is...it's a wonder anyone can talk.

Some speech sounds are produced with the lips, some with the tongue forward, some with the tongue back, some require nasality, some are voiced (g), some are voiceless (k), etc. etc. All these different movements are not innate in a child with apraxia. They must learn how to produce a sound or a word (using cards, mirrors, maybe a hand moving their mouth to the right spot, etc) and repeat them until the pathway is set and "remembered." Jaycee's brain automatically remembers how to say "mama" now easily. On the other hand, "dada" is very inconsistent. Sometimes, she'll try to imitate dada but it comes out "mama". Other times, her tongue is searching for the right spot and she just makes a grunt noise. The point is, she desires to speak, but it is really hard and frustrating for her.

Fortunately, Jaycee has her communication device and sign language to communicate with us. She can use those methods to label objects or people, answer very simple questions (when she wants), request what she wants to eat, drink, watch on tv, and get my attention. 

Still, there are times when I find myself saying, "I wish she could just talk." There are times she literally laughs out loud when she's asleep. I would love to know what she's dreaming about. There are times when she's dancing to the music in her head. I wonder what song she's thinking about. I'd sing it for her. She's attempted to grunt out "I love you" and she has said it (at my request) on her talker. But, I wish it would come out of her mouth like my son. When she's sick, I would love to know what hurts and how bad. I would love to know about anything she's done when I'm not with her. Whether it's at church or school, she can't tell me what she has done. I'm left asking her my usual question, "Did you have fun?" She usually answers yes or no with a head shake.

So, when your child doesn't speak, its important to have all those other communication methods. Whether it's a hug, a sign, a communication device, a wave, a facial expression, or one of her made up gestures, it allows me to learn about her. I'm constantly looking for those little insights.

Whenever she does say something new, it feels like a miracle. She started saying "amen" out of the clear blue this year and has managed to keep this word in her inventory. Jaycee started saying "mom" to mean grandma and "mama" for me. It's a step forward. It's something to get excited about. It gives me hope that one day she'll be able to tell me all of those things I want to know.