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Susanne, the Social Butterfly

Susanne is an 11-year-old girl who lives in Texas with her mom, Susan and family. “I call her my little secretary because she has a memory that won’t quit!” remarks Susan. “She remembers everyone’s birthdays and phone numbers, and you better remember if you tell her you’ll do something on a certain day because she’ll hold you to it!” Susanne is a very sociable, affectionate and outgoing girl. She likes to interview everyone she meets, and will offer up some information about herself as well – like that she’s the youngest of six children! In the morning, Susanne is very independent and will get herself dressed and ready for school, although Susan admits that she may need to spruce up her hair a bit. She takes the bus and arrives at elementary school, ready for a day of sixth grade.

In the mornings, she attends an adaptive dance class that she loves. Her day then consists of regular education classes of science and math, and individualized reading instruction. She also sings in the school choir. Once per week Susanne works on pronunciation speech sounds in speech therapy. In a recent parent-teacher conference, the team celebrated that Susanne has been doing very well in school and they agreed to create more challenging work with increased responsibilities in school.

Outside of school, Susanne is very popular. The family takes bets that they will not be able to get through a visit at the grocery store or dinner at a restaurant without someone saying, “Hi, Susanne!” She is also very involved at her local church, which she attends every Sunday with her grandparents. Susan notes how much the older people adore her. She is part of a youth group at the church and goes on trips to sing at nursing homes with the youth group.

Susanne’s three oldest siblings have moved out of the house, but Susan says they dote over her, and keep in touch with her often. She has an older brother and sister who still live with her, and in contrast, have more of a typical sibling relationship with Susanne! Susan says they will argue and tell her she’s annoying – typical sibling stuff – but are sympathetic and supportive when Susan has medical flare ups.

Susanne started life in the NICU, born just a little premature. In utero, an ultrasound showed that one kidney was bigger than the other. Other than that, the family did not know until she was born that anything was different about her. When she was born, however, she was only four pounds and it was found that she had only one kidney, a heart defect, and a tethered spinal cord. The heart defect has since resolved, and Susanne had back surgery to fix the spinal issues. Around five years of age, the neurologist suspected Kabuki Syndrome, and genetic testing was done to confirm the diagnosis. At her last appointments, her heart and kidneys have checked out as healthy. She did not have cleft palate, but she did have a high palate. The family has worked with an orthodontist with palate expanders and braces to fix this problem. She has had eye surgery for lazy eyes and ear surgery for cholesteatoma, which left her with decreased hearing in one ear. Susanne does suffer from back pain when walking and gets hip injections. A surgery is being considered for when she is done growing.

Susanne has an active life at school, with her large family, and at church. She goes to birthdays with her friends, and they have come to her birthdays for a sleepover. She even has a boyfriend at school! She has attended two middle school dances this year, and did not want to leave the Valentine’s Day dance! When she grows up, Susanne says she would like to be a teacher.

Advice to Teachers:

  • Always have patience.
  • Find what the child is capable of and follow their lead.

Advice to Parents:

  • Advocate for your child to be in programs that will foster growth.
  • Nobody knows exactly what to expect with Kabuki, getting connected with other families can be helpful.