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Nina, the Curious Princess

Nina is a curious, playful four-year-old with a great memory and imagination. She lives in Vermont with her mother, father and brother, Keenan. Her mother, Zoe, shared with us that Nina is a great talker; “She talks like an adult!” Nina can hold a conversation with her mom and dad for a half hour! “At first she can be shy and quiet,” remarks Zoe, “and then she becomes nosy and curious about everyday life.” She loves to visit neighbors and go on adventures to other people’s houses. Zoe mentioned that when Trick-or-Treating, Nina was more interested in looking in people’s houses than getting candy!

When asked about her medical history, Zoe notes, “She has fought a lot and done well.”

Nina’s parents knew at 18 weeks gestation that something would be different about her. There was fluid seen in her ultrasound, and the doctors thought she might have Down’s syndrome. Zoe remembers a long and confusing pregnancy. She was induced so they could have Nina in the hospital and avoid complications. Nina stayed in the NICU for two weeks and had trouble feeding. She was born with laryngomalacia, but has since grown out of it. She was also diagnosed with hip dysplasia in both hips, and has worn harnesses to correct her hips. The hospital referred them to early intervention and Nina began receiving services at four months old, which provided support to the family. Nina was later diagnosed with Kabuki Syndrome when she was just over a year old. After that, her parents felt like they had a better idea of how to manage Nina’s needs moving forward. She sees a variety of specialists to support her changing needs and healthy life.

Nina had a procedure on her heart due to a valve being too narrow. Because of this she can get tired easily, and her cardiologist recommended that she take breaks when she needs them. This is something they accommodate in the classroom at preschool. Nina does wear glasses and has one eye that turns inward. She is not tall, but Zoe remarks, neither are her parents!

After early intervention, Nina went to HeadStart. Zoe noted that this was great for Nina and helped her with a lot. She specifically remembers that Nina had difficulty with sensory activities. She would get upset if her hands got messy, like getting paint all over them. HeadStart worked on those skills and now Nina will put her hand right in some paint!

Nina currently attends preschool and is part of a typical classroom. At first, Zoe and her fiancĂ© were nervous about Nina attending preschool. The teachers have learned how to best accommodate Nina. She has her needs met in the classroom while staying included with her peers. Most of Nina’s difficulty in school is keeping her safe because of her physical differences. She wears SMOs to keep her stable, and can walk around, but cannot run or jump. Because she is unsteady, an adult supports her to play on the playground. Everyone in the classroom, including the children, need to be conscious of how she moves in the room. The whole class is being taught to walk carefully and stay in their own space. Because Nina walks slower than her peers, the teachers have Nina lead the line at school so no one gets ahead of her. Now Nina’s parents note that she has really flourished in school, and it has been great for her.

At the preschool, Nina receives occupational therapy, and physical therapy. The OT and PT support her in the classroom and let Nina’s friends participate with her, so she is never singled out. She receives speech services outside of school. Language is a definite strength for Nina, but speech works on pronunciation of her speech sounds in therapy so that she is easier to understand.

“She’s a daddy’s girl, and a princess,” quips Zoe. When at home, Nina’s favorite thing to do is play kitchen. She also loves Doc McStuffin, playing with babies, and playing on her Kindle. Nina gets her mom to do a lot of role-play with her. She loves pretending to be her teacher or a doctor. When she gets home from school, Nina has a great memory and can recite conversations that people had and stories from her day. Nina loves her family; she will tell her mom that she misses her brother. Zoe calls her daughter “her best friend.” She also has a great sense of humor. Recently, when her dad asked her to do something, Nina responded, “Not today, junior.” She is hesitant around other children, but loves talking to adults. At her most recent birthday party at an arcade, Nina liked the slower pace and had a lot of fun people watching. When thinking about her future Zoe imagines Nina being successful, having a family, and getting a job. Zoe wants her to follow her dreams.

Advice to Teachers:

  • Don’t make assumptions – wait it out and get to know the child.
  • Be open to letting children with Kabuki try new things.

Advice to Parents:

  • You are your child’s greatest advocate. Speak up- they need it.