So, a few months ago I got an app by Hooked on Phonics for Miss Sunshine. I can't say enough fantastic things about this app. Miss Sunshine loves getting to "play" on the tablet, and I love that she's learning while playing.
She has begun reading short books within the app on her own, and is learning the principles of sounding out and joining sounds to read words. One thing I have noticed, though, is that she struggles with letter sounds that are similar on some of the activities where she has to listen for a sound or word. It concerns me, because I don't know if it is her not giving her full attention, or if it is a result of her hearing loss. Or even if it is a sign that the hearing loss has progressed more. I tend to torture myself with worrying about it, which is not good for anyone.
I wish I knew what the answers were, but this is just another uncertain part of our journey, I suppose. It is hard, as a parent, to not have all the answers. It is hard for me, the control freak, especially. Just one more thing I can't automatically fix for her. I hate the fear and uncertainty that surrounds every visit to the ENT, every time she complains of an ear ache, every time she answers "What." When I say something to her. That insidious little voice in the back of my head whispering that maybe this time it will be too far gone, that this time will be the time we have to order that hearing aid.
I have to make sure to tell her new teacher that she needs to position Miss Sunshine so that her left side faces the teacher, so she can hear her more clearly. To let her know that if Miss Sunshine is not looking at her and focused on the conversation, she may not respond. Not beaches she is ignoring, but because she honestly cannot hear her. I hate it, but it's a conversation that must be had.
The hearing aspect is something most people never think about when it comes to cleft. So often I have heard "You know, our child had lots of ear infections and we opted not to do tubes. They hear just fine." It's different for a child with cleft. It's not about infections. It's about persistent fluid in the ears because the palate doesn't function properly. It's about scarring, and loss of movement, and the possibility of permanent hearing loss. Yes, there can be infections. And these things are all risks of infections as well, but for Miss Sunshine it's different. It's not about infections for her. It's just another round of surgeries she has to face in the list of surgeries she has. One more thing about her cleft that We have to compensate for, deal with the best we can.