The Burden to HEAR

Only 21 hours until Fiona’s CI surgery. I find myself grappling with the same issues about the burden of hearing placed on Fiona. Last week we had several issues with the FM system and her hearing aid during on-line learning. I still have not found a great way to set up the devices for Fiona to use the interpreter virtually. So, she missed almost a week of lessons. I finally set up the interpreter on the large i-pad and moved it away from the teacher/class computer and I did see Fiona watching the interpreter more that way. Last week she turned the volume down all the way on the computer and said she would watch her teacher’s lips. This shocked me because watching lips on Zoom calls is more than difficult! I think it’s pretty impossible. But when I look back at the week, I did start to get frustrated that Fiona would not try to use her FM or focus on the interpreter. She checked out in a way. But all the burden was on her. She was expected to adapt and figure out how to get the information, and even though she’s been given several tools to do so, it’s a lot for a six-year-old to do.

I spent the summer advocating for a Virtual Deaf Education plan. I had meetings and phone calls with Marin County Office of Education and San Rafael School District. I rallied a group of DHH parents, and they participated in zoom calls. I helped get a Deaf Education Training Session for my district and DHH parents from Lauren Maucere, a deaf education advocate and educator in the LA public school district and former SRSD student! The district is still working on adding Lauren’s recommendations to our mainstream deaf education in San Rafael. I learned so much from the training and I know the other participants did as well. This was also a huge step for my district to take.

I was not able to secure a Teacher of the Deaf or a special virtual Deaf ed program for the deaf students in Marin. There was not enough time I was told to start a whole new program. But imagine if there were such a program for Fiona in Marin, a program with a teacher of the deaf and a peer group and a bilingual approach? So she had direct instruction from the teacher. At one point prior to starting kindergarten I was given an idea about sending Fiona to CSDF for one year so she would become fluent in ASL and then when she came back to start first grade she would be able to use her interpreter in a mainstream class. If we lived closer to the CSDF campus I would have done it, but even at 1.5 to 2 hours away in heavy traffic I wonder if I should have gone that route. But then I would not have been in Marin advocating for Fiona to the school district and the county.

My goal going forward is to try to sway the county to move towards a more holistic approach to Deaf Ed. It’s hard because many parents don’t have time or energy to advocate for their kids. Also, there’s still so much misinformation about Deaf Education and ASL out there it’s hard to re-educate everyone. I am having reservations about the CI surgery; I hope this is the right path. But it’s not my body, it’s Fiona’s. I just hope she is making this decision because of the right reasons and not because of the heavy burden that’s been placed on her to HEAR.

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Thoughts on Motherhood Through the Eyes of an Artist