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Parents' Corner: What the Mom of a Child with Visual Impairment Wants You to Know

Editor’s Note:   I started chatting with Amber Bobnar, (the mom interviewed in this article) after PediaStaff discovered the website.  She and I discussed that PediaStaff audience of therapy clinicians would benefit and enjoy this “Ask the Mom” column she wrote for Perkins School for the Blind.

Amber Bobnar is the mother of an adorable little five-year-old boy, Ivan. Ivan attends the Early Learning Center at the Perkins School for the Blind and is completely blind. He also has a rare neurological condition called Joubert Syndrome that affects his muscle tone and balance as well as a seizure disorder and language processing disorder. Amber runs the website, a site designed to provide parents of children who are blind with information and support. She also has advice for teachers when working with parents of children who are blind.
As a parent, what do you think is important to remember about the communication between home and school?
Leaving your child in the care of a teacher can actually be kind of scary. Think about the beginning of a new school year: We’ve only barely met a new teacher and suddenly we’re trusting them to care for our kids for six hours a day!
I think this kind of fear is normal and most of us do our best to just move past it, but parents of children with disabilities probably have to fight this even more. Our kids are vulnerable and often can’t speak up for themselves. They can’t be their own advocates, maybe can’t even really express discontent or discomfort, so parents feel much more of a responsibility to take on these roles for their children.
s parents of children with disabilities, we need to be able to communicate with teachers to know exactly what’s going on in the classroom, not only so we can feel confident that our child’s needs and IEPs (Individualized Education Programs) are being met, but also so we can know that they are happy and well cared for.
What do you think teachers need to know about the parent’s perspective when it comes to communication?
I think it’s important for teachers to understand that as parents we may be feeling a lot of fear, anxiety, and even a bit of guilt. We may be afraid that our child won’t receive the services outlined in their IEP; we might feel anxious that our child won’t fit in with the rest of the class; and we may even feel a little guilty that we’re having someone else take on their care for such a long period each day.
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