Parenting a child with Cri Du Chat syndrome - URevolution

Parenting a child with Cri Du Chat syndrome

Featured Articles

Photo for the article:
Credit:

©Anatoliy Karlyuk / Adobe Stock

Parenting a child with Cri Du Chat

My parents captured my childhood in one simple phrase in my baby book: “It appears that at eighteen months Leah will be a chatterbox.” This was clearly a genetic trait. Jordan, by age four, introduced us to the beauty of having the same conversation about thirty-two times a day. Partially this was because of her rare condition, she was a child with Cri Du Chat syndrome. Partially, because she was my kid.

This first conversation was only about the pop singer Ariana Grande. She was never supposed to speak, so we would take any topic we could get from her. Even popstars.

“Jordan would you like chicken soup or pizza for dinner?”

“R- Grande.”

Some might say – because she was child with cri du chat syndrome – she was obsessed. Others would say she was just a child. She wanted her ponytail to match Ariana’s and desperately needed to learn her dance moves – despite how provocative they were. Our closest families and friends would send her magazine clippings, YouTube videos, and even a full book about Ariana Grande’s life. The boys even said “R-Grande” as one of their earlier words. Totally typical, momma, dadda, dog, famous pop singer with a trademark ponytail.


 

Read moreHow to ask someone about their illness?


When Disney’s Descendants came on the scene, Jordan soon forgot the days of “fabric free” dance videos, as they say on my favorite Texas billboard, and moved onto Mal and Evie, the children of famous villains. She learned the entire plot, backstory, character history of the show. This made for some awkward grocery store interactions when one time she would shout, “Evil Queen has locked me in the car,” and I hoped the cashier realized it was merely role-play.

She often shocked us by stopping a room full of people to exclaim, “Excuse me, I have big news. Drum roll please.” Shy was not in her vocabulary. She would not continue until everyone was drumming on the surface of their choice. It was like she learned the teacher trick: I’ll wait.

“Okay?” Her voice would crescendo with excitement. “Who is Mal’s dad?”

I was not sure she even cared who the father was, but we had this discussion 800 times. That is not a hyperbole. It is discussed three, eight, fourteen times a day. My uncle even took a day off from his medical practice to watch Disney’s Descendants so he could talk to her about it. We continue to encourage her functional discussions, and while we love the conversations, even her most beloved community needed a break from a much loved child with cri du chat syndrome pontificating the familial heritage of a fictional heroine.

Child with long curly hair strikes a fun pose with her arms stretched backward. The child is in black and white but the background is yellow and her sunglasses are red.
Caption:

While most individuals who have cri du chat syndrome have difficulty with language, Jordan communicates the best she can as a delicious, curly-haired chatting machine.

Credit:

©Anatoliy Karlyuk / Adobe Stock

 

This was how we landed on the next fixation: The Presidents.

Jordan learned about the presidents in first grade. She repeated the grade, as typical with children with profound delays. She was going to be in school until she was 21, it was best not to spend seven years in high school. President’s Day came and went the first time. By the second time, she was celebrating her favorite Presidents: Washington, Jackson, and her favorite new PresidentPresident, Tom Chester. (He apparently didn’t get a lot of attention in the history books).

If we are holding up the line at the grocery store, it was because Jordan needed to know when the cashier was born to match the PresidentPresident. At the doctor with the flu? Perfect time to tell the Nurse born in 1981 that she was a Reagan baby. An infant spotted at the park – Jordan would run up and shout “Donald Trump baby,” usually leaving a perplexed look on the parent’s face. Her question even prompted a debate about politics at the neurologist’s office.

Jordan’s teacher recently shared, “Jordan’s energy makes everyone feel welcomed. She has such an amazing impact on everyone she meets.” Jordan was innately drawn to people. But she needed to refuel before the next performance. Therefore, we spend many long days at home just talking about the topic of the Day.

“Mommy,” she giggled upside down on the chair. “Mommy. It’s important.”

“What, honey?”

“Mommy, who is Mal’s Dad?”

“Jordan! I figured it out. It’s Obama!”

When Jordan laughs so hard, she collapses onto the floor, revealing a tiny dimple by her left eye. It is contagious.

Sometimes parenting a child with cri du chat syndrome is a breeze.

author-img
Article by
Leah Moore

Leah Moore is a high school English and theater teacher who believes in the power of sharing stories

Caption:

She often shocked us by stopping a room full of people to exclaim, "Excuse me, I have big news. Drum roll please." Shy was not in her vocabulary.

×