Things I Don't Know about my Daughter

I recently returned home from a lovely 10-day vacation with my family and parents. We had a wonderful time in Florida and enjoyed spending time together.

During one of our meals at a restaurant, there was a heated discussion about bacon. Bacon is pretty important, especially if you are doing the Keto diet.

I like my bacon thoroughly cooked. My husband says I eat it burnt, but I disagree. I don't like it blackened, but I do like it hard and crunchy. On the other hand, my husband eats it chewy and soft. I  struggle to cook bacon for him as I feel I am serving it to him partially raw. He hates "overcooking" the bacon for me. This is one of the many trials of our marriage.

During our discussion on the proper way to eat and cook bacon, my son chimed in regarding his preference. It appears he likes bacon cooked somewhere between my husband and I's crispness.

Then it hit me. I have no idea how Jaycee, my 14 year with Down syndrome and language delays, likes her bacon. Jaycee is a great eater, so she will eat bacon nearly any way it is presented. Yet, I wonder what her preference is. I cook her bacon the way I like it, but maybe she hates it that way. It's hard to know exactly her thoughts on this important subject.

On the last night of our vacation, there was another conversation where Jaycee's contribution was missing. We reflected on all of highs of our trip and debated about which Disney park provided the most enjoyment. We talked about the different rides that were our favorites. Jaycee, with her limited speech, listened to us and smiled.

I asked Jaycee what her favorite part of the vacation was. Her response was, "Gabby."

Her answer didn't make sense because Gabby is her cousin who wasn't even on our trip. Questions are generally hard for Jaycee to comprehend and answer. She does better with questions that require a yes/no response or questions that contain specific choices. I tried that tactic with her but still got no good answer.

I don't know what her favorite part of the vacation was. Who knows if it was meeting the princesses, walking on the beach, or riding coasters? She seemed pretty excited to meet Gaston and has watched the video of their meeting a few times. Was that her favorite part?

Despite these unknowns, there are plenty of things I do know about Jaycee. She shows me her preferences by her actions, behaviors, and words/signs. She asks to call her cousin Gabby like any other teenager. When I gave her some options for her birthday lunch, she answered "spaghetti" consistently. She tells me if she wants to go home or if she doesn't want to go to school. We can talk to each other about many subjects.

I'm thankful for the things she can communicate. I appreciate what we do have in this life. Sometimes, I do wish there was more. There are things missing from our conversations, and certain times (like vacations) remind me of the gaps. Perhaps one day, the gaps will be fewer and fewer.

Maybe in the future Jaycee will pick up her perfectly cooked, nearly burnt bacon and tell me it's horrible. That would be a really amazing day!

The Art of a One-Sided Conversation

I have been monopolizing conversations with my daughter for years. I'm not rude. It is done out of necessity. At age 13, Jaycee is saying more and more words. Still, we can't have full conversations that most mothers and daughters do.

For a good 8 years, Jaycee was nonverbal. During those years, Jaycee communicated with a few words, sign language, and a communication device. During that time of her life, our conversations after school were something like:

Me: Did you like school today?

Jaycee signs: School

Me: Was it fun?

Jaycee: Grunts happily (I interpret as yes.)

Me: I missed you while you were at school. Mommy had to work.

Jaycee signs: Work

Me: We're going to go home and make dinner.

Jaycee signs: Home. Eat.

Jaycee signs: Pizza

Me: No, we aren't having pizza tonight.


There were few questions Jaycee could answer back then. There were no stories she could offer on her own. Getting information from her was next to impossible. Jaycee often repeated back words she heard me say. She wasn't able to express many things out of the blue. If she did, I struggled to understand what she was talking about.

There is an art to having conversations with a child who doesn't respond with many words. You have to know ways to keep the conversation going when words are few from your communication partner. It is possible to converse, but there's not much depth. 

Progress is a wonderful thing. Now, I can have better conversations with Jaycee though they are still mainly one-sided. A typical after school conversation is now:

Me: Was school good or bad today?

Jaycee says: Good (She also gives a thumbs up.)

Me: Who did you play with at school?

Jaycee says: Hope, Mikayla

Me: I'm glad you got to see your friends.

Jaycee says and signs: School. Friends.

Jaycee says: Bubba?

Me: We're going to the pharmacy first. Then, we'll pick your brother up from school.

Jaycee says: Uh-uh (as in no). Bubba!

Me: He's still in school. We have time to go to the pharmacy first.

Jaycee says and signs: Bubba. Home.

Me: First, we'll go to the pharmacy. Then we will get bubby. Then we'll go home. (I hold up a finger as I say each item, so she knows we are doing 3 things.)

Jaycee: Imitates holding up three fingers and babbles in an attempt to repeat what I said.


This is how we converse now. It's not the typical exchange for most teens with their moms, but it's our way. I am happy she can speak more now and not be so reliant on gestures or sign language. I'm thrilled she contributes her own thoughts to our conversations. Our talks aren't completely one-sided now.

When Jaycee was little, I wanted nothing more than to talk with her. I wanted to know what she is thinking and what happened during her day. Even now, I still want these things. However, I am grateful for the progress she's made. I'm happy to get glimpses into her thoughts.

I am also extremely grateful that there are several people in her life that know how to speak to her too. Grandma, cousin Gabby, Aunt Steph, and a host of other people have also mastered the art of the one-sided conversation. Jaycee has opportunities to converse with other people besides me. I'm grateful these people have figured out what questions to ask her and know how to pull information from Jaycee.

After all, Jaycee does have something to say. She doesn't need 30 minutes of non-stop talking like so many of us do. Sometimes, a short sentence and a big, firm hug can speak volumes.

Maybe one day Jaycee will be monopolizing our conversations. I would be thrilled to have that experience!