By Bianca’s family
Bianca, or B (as we call her) is very much a teenager. Born at 5 lbs. 9 oz, the first label the doctors gave her was “failure to thrive” until we could get her properly diagnosed by a geneticist at eight months old.
A once floppy girl with low muscle tone, she is now one of the mightiest, petite girls you’ll ever meet.
The previously silent girl can now talk nonstop (albeit repetitively) when she wants to. Balance is no longer a problem. She can navigate obstacles in her way. One of the traits consistent with B is her love of being surrounded by people, not too close, but around her. She loves music, dancing, food, and people having fun. This girl loves to party and have all eyes on her!
We are incredibly fortunate to live in Westchester, New York, where we can choose activities and resources. We would be remiss not to take advantage of them. A few years ago, we embarked on the paperwork journey with OPWDD (Office for People with Developmental Disabilities). Last year, we started receiving self-direction funding for her community classes, respite, and community habilitation support.
While the system can be tedious and frustrating, the benefits for Bianca make it worth the trouble, especially as puberty behavioral changes have made it necessary for her ‘village’ to grow.
Bianca has been taking extracurricular classes, starting with dance, since she was four. While we were concerned about how she would do in a structured environment, thanks to the fantastic teachers, she stayed for ten years until COVID-19 hit. She performed on stage with her peers in front of cheering audiences at the annual recitals and musical plays. This girl does not hesitate to perform and be in the spotlight. She has participated in musical theatre, band, art, sports, and Girl Scouts.
Given her abilities, we can’t emphasize how lucky we are to have organizations and business owners supporting her in adaptive and regular classes.
Her current high school teacher takes her to Theater Club at school, and to continue her journey in Girl Scouts, I (mom) became a troop leader myself. She also has her Dad, Nico, her 26-year-old brother, and his girlfriend, Heather, keeping her entertained and taking her places. Thanks to technology, she keeps in touch with her Tita (aunt), Lolo (grandpa), and Lola (grandma) overseas via video chats regularly.
In addition, Bianca also has a service dog, Morla, who joined us as the lockdown hit. While Morla’s primary task is to keep track of B due to elopement, her secondary task is to be a social icebreaker. Having Morla allows us to prompt B to speak up and engage with people who come up asking about her sweet dog. Morla also gives B that bridge so that people can be comfortable enough to approach her, realizing that her dog is there to assist her.
She is now in the throes of her teenage years. Unfortunately, recently, increasing behavioral challenges have started limiting some of the classes and activities in which she can participate. Despite these circumstances, we keep her socializing in the community in other ways because she thrives on other people’s energy. A trampoline park nearby is now an excellent outlet for her desire to jump recently, enjoy pumping music, and be around peers.
Hello.. I am a mother of a boy who has this syndrome. Can you help me learn more about it?