Tuesday, February 16, 2021

Turning 15 with Down syndrome

 “Birthday! Me?” Jaycee has asked the past few days.

She knows it is coming up since we have been talking about our plans recently.

“How old are you going to be, Jaycee?” I ask a few times a day to help her remember.

She pauses and waits for me to supply the answer in words and gestures. She mimics both in return.

This week, we will celebrate Jaycee’s 15th birthday. She wants cookies and cream ice cream with chocolate fudge cake for her special treat. Hulk decorations will be placed in our house, and we will throw the best party we can in a near-blizzard condition.

Her birthday is always a time of reflection for me as well as appreciation for her accomplishments.

Jaycee is speaking more each year. When she wins at a game, she charges around the room saying, “Jaycee wins!” When she loses, she says “Oh crap!” Both reactions make us laugh.

We smile too when she says, “No thanks. I’ll pass,” which her brother taught her to say a few months ago.

When her younger brother started to become taller, Jaycee recently exclaimed, “Dang it!” Frustrated by the results of the head-to-head measurement, she got on her tiptoes to try to make up the difference. She’s a clever girl.

Jaycee wrote a song about one of her cousins. “Joel Butt. He’s the biggest butt in the world.” She sings it with a huge smile and laughter. It’s meant to be a song of endearment. The entire family knows the song. It’s a family joke to sing the song but replace the name with whoever is being annoying at the time. If we sing it about Jaycee, she says, “Hey!”

Her speech keeps progressing, but there are areas of struggle. When she’s ill, it is a mystery to me how she feels as I interpret her body language and behavior. Answering questions creates a large gap in our conversations. We try to give her questions that need only a yes or no response, but even that isn’t always reliable.

Jaycee is a YouTube fanatic. She loves Kidz Bop music videos and has memorized dance moves. At the same time, she enjoys watching Cocomelon and Disney Junior shows. Jaycee loves to watch Ninja Kids and will rewind parts she likes to watch over and over until we beg her to choose another video. If there is a young girl in a video, she says, “That’s me.” She also identifies other people in videos and claims they are her brother, cousin Joel, or cousin Gabby.

Shopping is an activity that Jaycee enjoys. She loves to shop for clothes and makeup. Jaycee also likes looking at baby dolls, Disney toys, Blippie items, and other things for younger children. Money and prices do not mean much to her. She loves opening up her purse to pay for items herself. She needs help making sense of her bills when checking out. If the total is too high, she will whine when I force her to hand over more money than she wants to part with at the time.

At home, Jaycee can do some chores under supervision. I appreciate her help when changing bed sheets. She loves to assist in the kitchen but doesn’t understand directions that need to be followed in a specific order. She can stir things well and put things in the dishwasher. Jaycee can pour her own drinks, which is a great step towards independence.

Despite her delays with Down syndrome, we see improvements in her each year. While other parents raising a child this age may be pondering future vehicle and college choices, we have had brief moments of apprehension when we try to look a few years down the road. We know support will be needed long-term, and we don’t know what that will look like exactly.

Still, we celebrate our daughter’s birth with much joy. Her life is a gift; she’s the daughter we always wanted. There are no regrets here. Only sincere wishes for a happy birthday and many, many more.

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