350 NRamirez Gina's Story
Storyboard Text
- Nicole (Me)
- This is Gina Mirabella and her mother Niki Mirabella. Gina was born on January 3, 2000 with Smith-Lemli-Opitz syndrome (SLOS), a rare genetic disorder that severely impacted her development.
- Despite the doctors telling Niki things like she should institutionalize Gina because it would be too hard to take care of her, she was still young and needed to move on with her life, and that she should hope for the worst, Niki found the strength to love, care, and fight for Gina!
- Smith-Lemli-Opitz Syndrome (SLOS) - the body lacks an enzyme to convert 7-dhd cholesterol to cholesterol and can severely impact development
- Gina & Niki
- I was saddened to hear that Gina's needs, such as socialization, peer interactions, and communication through assistive technology, were not focused on as much in K-12 as the school's own goals for her. However, I was really impressed with Niki's determination to advocate for Gina's needs and her love for her daughter, despite the negativity given to them.
- 1. Hold monthly meetings with parents.2. Invite parents to PTA meetings.
- 3. Include parents' social media handles in class newsletter.4. arrange quarterly meetings with AP, Special ed teacher, and parent.
- As an educator, it is very important to me that we listen to the parents' voices because they know their child better than anyone! Above are 4 ways I, as a teacher, can help share parents' voices.
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