As our Jordan’s Guardian Angels and Jordan’s Syndrome community continues to grow, one of the conversations we often have is about self-advocacy: how to teach our kids to advocate for themselves and feel empowered to talk about their Jordan’s Syndrome diagnosis, but also their needs, wants, and desires. Research shows that when our children are bringing more to the classroom all of the child’s peers benefit from the learning opportunity.
Christina Janes, Director of Outreach and Awareness for Jordan’s Guardian Angels (JGA) recently sat down with Carole Bakhos, Project Director for JGA and we discussed how her daughter, Yara, is learning to self-advocate, how inclusive education is so important and how to get the community to accept differences as well.
Christina: How has your experience with public schools been so far?
Carole: We’ve had positive experiences with public schools so far. The main reason is the fact that we realized early on that we need to be driving that education bus. As a result, my husband and I work on self-educating to have the tools to advocate for what our daughter needs. Our main goals: access to the curriculum and access to friends… sounds simple but a 40-page IEP (Individualized Education Program) is still necessary as most schools are not established with universal design methodologies and classrooms in place. Inclusive education should not be a fight or a privilege but a right. We wouldn’t change our children for the world. Is this world ready for what children with disabilities have to offer?
Christina: Do you think schools (at least in your area in Colorado) are doing enough to create an inclusive school community for children with disabilities?
Carole: Schools are doing a better job integrating children with disabilities, but are they being included? Inclusive education designs different access points to the curriculum for children that need additional help as well as those that need to be challenged. Decades of research shows the benefit of inclusive education for children with disabilities as well as their classmates. I want that for my daughter and my son alike.
Christina: How do you think Yara’s experience will be different then when Mazin
(her Brother) goes to school?
Carole: While Yara’s little brother hasn’t started school as yet, I can tell you from now that his experience will be different from his sister’s. Jordan’s Syndrome has caused Yara to have to work harder for what comes natural to most. She walked around her 3rd birthday and first talked at 5. Before then, she used a walker to get by and sign language and a communication device to communicate. Even today, at 3rd grade, Yara has a 40-page Individualized Education Program (IEP) mostly full of accommodations that enable her to thrive fully in the general education environment.
Christina: How much do you believe inclusive education has benefitted Yara in the long run?
Carole: I often reflect on our experience with Yara and how different she would be today if she was judged from preschool age and had to adhere to all these limitations and boundaries. By learning alongside her peers, Yara is able to read and do math at her grade level today. She comes home and shares about her day, most of her stories involve another student in her classroom… Through inclusive education, Yara was able to shatter all expectations and to amaze her teachers and peers just like she amazes us daily. I know, without a doubt, that none of that would have been possible without this rich educational setting she’s been emerged in.
Christina: I know Yara is a terrific self-advocate, and she recently had a chance to teach her classmates all about herself and her Jordan’s Syndrome diagnosis. Tell me about that!
Carole: Earlier this month, our family shared with Yara’s classmates regarding Jordan’s Syndrome. Yara wanted to be open about her diagnosis in an effort to normalize disabilities and look past the differences. The classroom read the book written by Jordan’s Guardian Angels “Let’s be Friends” about a little girl, Sarah, also living with Jordan’s Syndrome and prepared questions for us. Yara is leading her way along her peers to embrace their identities and celebrate the richness of diversity.