Supporting Caregivers

Tania Nawazkhan – Big Sister, Big Love

In our final feature honoring World Down Syndrome Day on March 21, we chat with Tania Nawazkhan who represents the Netherlands. She is the proud big sister of Chris Losokola. Chris has Down syndrome and lives in a residential home with a group of his peers. I’m so glad Tania was able to stop by and discuss how the Netherlands instills independence in their citizens with disabilities.

Lillian

Tania’s family moved to the Netherlands from the Congo when she was four years old. Back then, they were a family of five: Tania, her two sisters and her parents. But shortly after her brother Chris was born, her parents separated and her mother became a single parent of five. It was a tough time and the now four girls didn’t really understand what was going on with their baby brother.

“For us, not only were we pretty young, at the same time we were going through that phase of our parents separating. My mom wanted to keep things as normal as possible. And she was slightly in denial, hoping she could tweak this and tweak that and Chris would be a normal boy. So, she never really went into an explanation or discussion about his condition. Also, we’re an African family where those types of things are a little bit taboo. We didn’t talk much about it. We just went with it day by day.”

As the 2nd oldest, Tania helped take care of her younger siblings and she watched as Chris grew and developed with the help of speech and mobility therapists who came to the house and worked with him. During this time, the therapists and social workers suggested different resources that could benefit Chris in the long term. This is how Tania and her family learned about the program that encourages independent living for people with disabilities who need constant supervision.image

“We as a family made the decision for Chris to get the most out of him having a disability, but still living a normal lifestyle so we placed him in the group home at age 12.”

Chris is the baby of the family and the youngest of four girls. Add his mother to the mix and he had five women catering to him and telling him what to do on a daily basis. At the group home, Chris had boys he could joke and talk with, listen to music with and that environment was something he never had before.image

“He didn’t really understand the transition, but at the same time he enjoyed it because he had that independence and being around people that weren’t his sisters or his mom. He can be himself. It’s all people that are like him. He blended in very well and he felt right at home.”

Chris has his own bedroom and shares the rest of the common areas with four to five roommates along with the house leaders. They all cook together, eat their meals together, then hop into their mini-bus to head to their jobs. Each resident has a job that was picked especially for them based on their area of interest. And every other month, the group goes on a fun field trip.image

Not only does this program benefit Chris, it benefits his family, as well. The government pays for everything: Chris’s monthly rent, his health insurance, his food and clothes plus the activities they do as a group. Tania’s family pays nothing.

And Chris is flourishing as an independent man of 23.image

“Chris is very happy and upbeat. He loves music, especially our Congolese music. He is strong-willed. I don’t necessarily like the word ‘stubborn’ because that comes across a little negative. Whatever he wants, good or bad, that’s what he wants. But he’s very loving and caring, especially for anyone he feels is younger than him.”

Chris sees his family every weekend and now that his sisters are adults, he gets to spend time at a different house whenever he wants. Tania moved to the United States 10 years ago, but she and Chris talk and share videos via WhatsApp throughout the week and catch up on the weekends. He’s visited her twice and loved it.

Enrolling Chris in this program was the best decision Tania’s family could have made for him. It creates a positive environment and encourages his independence. The Netherlands is definitely doing something right when it comes to caring for their citizens with disabilities.

Written by Tamara Devers

 

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