Charlene is open and honest about her daughter with Down syndrome on social media

Charlene (Leena) ter Beek (28) lives with friend Niels, daughter Jaya-Rose and dog Putih in Driemanspolder. Just after giving birth, she found out that her daughter has Down syndrome. Now the Zoetermeerse shares joys and sorrows on Instagram and TikTok.

Charlene’s pregnancy went flawlessly and was even described as the perfect example. The couple therefore decided not to do an NIPT test, a blood test to check for chromosome abnormalities. “The nuchal translucency measurement was good, we are both healthy and Down syndrome does not run in the family. So the chance was only 0.14 percent.”

According to the curve

Jaya-Rose was born on July 25, 2022 in Langeland Hospital, Charlene says: “It was immediately said that she was a bit lighter, namely 2536 grams. So according to the curve she was too small.” However, that curve was for Dutch children. “We thought: come on, she’s an Indo. What’s in it for us?”

The pediatrician wanted to be on the safe side and checked several times whether her eyes and ears are equal. “In the end she said she saw a small chance of Down syndrome. Then you really don’t know what hit you.” The couple was mostly in disbelief. They decided to google babies with Down syndrome, but saw no match at the time. “We wanted to create a kind of hope. And we thought: this is just an Indo, that’s why she has smaller eyes.”

Read more below the photo>

A living loss

A blood test was performed the next morning and the suspicions turned out to be true. Jaya-Rose was diagnosed with Down syndrome. “They said she has the full variant. And everything was turned upside down. It was very intense.” The couple received a lot of support from family, but also from maternity care. “We called our maternity care Monica Tante Mo. She took great care of us, especially emotionally.”

And that help came in handy, Charlene explains, “They call it living loss. You lost a child you thought you would have. That can happen suddenly. For example, if you see another child of about the same age who does certain things differently.”

My boyfriend and I think it’s important to share more about Down syndrome

Vlogging on TikTok

Charlene writes and vlogs about motherhood Instagram, TikTok and Mamaplaats. She says: “My boyfriend and I think it’s important to share more about Down syndrome. People have a very different view of it. They often say things like, “Ah, pathetic.” But it just goes to show that they don’t know.”

Her followers are mainly mothers, with and without children with a syndrome. “We get a lot of compliments about how positive and loving we are. That is of course very nice to hear.” However, Charlene does not feel that she does more than other mothers. She also finds terms such as ‘special need’ or ‘problem child’ inappropriate. She explains: “We all have different needs, everyone is different. Yes, Jaya-Rose is even more different than we are from each other. But it doesn’t make her weird.”

Read more below the video >

@leenaworld Dagvlog Monday 6 February ❤️ someone has discovered rolling over #down syndrome #Down’s syndrome #theluckyfew #vlog ♬ original sound – Leena

The Montessori System

Jaya Rose is doing well. She is alert and cheerful, but sometimes angry. Charlene says: “People often say, ‘Kids with Down syndrome are always happy,’ but no one is. Jaya also has emotions like any other person.” Charlene therefore describes Jaya-Rose as follows: “Stubborn, loving, a crook and stubborn; with a dash between own and wise. So point her own way. But also just stubborn, you know. It is and remains an Indo.”

Charlene and Niels raise Jaya-Rose according to the Montessori system. Charlene herself attended Montessori school Passe Partout in Rokkeveen and then she followed Dalton education at Erasmus College. “So I grew up quite independently and I want to pass that on to my child. With the right attachment and balance.”

Connect people

Charlene works as a holistic coach and found out that there is little or no guidance for parents of children with a syndrome. But she will soon change that. “At the moment my friend and I are working on a house for peace and awareness in Zoetermeer, called Rumah Zenang. Here we will organize days for this group of parents under the name House of Soulshine“says Charlene.

The future of Jaya-Rose is still unclear, she explains: “It is different for each individual. There are children with down who are in a wheelchair or with autism. We don’t know about her yet. We keep the faith and we live day by day.”

Who is the next Zoetermeer of the week?

Do you also have a special story? Or do you know a Zoetermeer that we really need to interview? Let us know at [email protected]