“I’m perplexed” the audiologist said after explaining Fiona’s new audiogram.
“You need to take her to the head and neck doctor as soon as possible”
While me and Fiona’s teacher spoke to the audiologist, with worried looks on our faces Fiona rolled around on the floor, trying to get my attention. I had been sitting outside the sound booth while Fiona did the hearing test with her teacher this time. There was concern that me being in the testing booth with Fiona was causing the test to not be accurate. It turned out Fiona performed and behaved, she has a 30-minute tolerance for hearing tests, the same as when I’m in the booth with her. But everything must be ruled out, the test must be as accurate as possible. Fiona’s hearing in her left ear has dropped significantly. I knew this already; I didn’t even need her to take another test to know she was deaf in her left ear. Fiona has been telling me for months that she couldn’t hear her voice, she could only hear my voice. Then she started telling me that she couldn’t hear at all out of her left ear. Then when she got the ear infection in her right ear and couldn’t wear her hearing aid, she couldn’t hear at all, she was completely deaf. That seven days that communication broke down in my house, an experience I will never let happen again. I’ve already signed my whole family up for ASL classes.
I’ve always known Fiona’s hearing aids have limitations. They have been wonderful, by having hearing aids and attending a total communication preschool Fiona has had complete access to language acquisition. Except ASL, which I think the preschool should consider adding. At least on some level. Although much of the vocabulary in SEE sign is taken from ASl so that’s a bonus. Now I’ve been told there’s another form of sign language that uses ASL signs in English word order. Anyhow Fiona has been very lucky so far in her access to language. I have always been concerned that she would no longer have sign language support when she transfers to Kindergarten. Even with her hearing aids and her hearing as it was prior to this latest drop, I still felt she needed the sign language in school, I still felt like my family needed to learn sign language. I fought hard to try to get Fiona an interpreter in Kindergarten, I documented my experience with my daughter, times she missed things, all the times I needed to repeat things, how difficult it is for Fiona to understand what people are saying. Anytime conditions are not perfect, quiet, no background noise, a clear speaker, less than a foot from Fiona, she has a hard time. But Fiona did great on her testing, except for the receptive testing, but I was told she was tired at the time of the testing, and my request for an interpreter was denied.
Gasp, this word was in a bedtime story the other night next the word grasp. I explained this in sign and body language, Jack could hear and understand the difference without much explanation. Not Fiona, there are many words like this she will come in contact with, they will always be a problem when spoken. Well, GASP! Now everything has changed again. Now the school’s expert, who I’ve grown to respect and for lack of a better word love, is changing her entire recommendation. Now, that it’s been confirmed that Fiona is operating with one hearing ear that has a moderate to severe hearing loss she definitely needs an interpreter, probably for the rest of the time she is in school. Now, after all this time of me saying that sign language is crucial for Fiona and my family, I have gotten approval that this is true from the school districts expert.
I am glad that the tables are turning, don’t get me wrong. I just feel mad that I had to go through so much stress, go to so many meetings, saying we needed this support and I was made to feel like I was going to damage my child by getting her an interpreter, that she will just want to fit in. Now that we are experiencing a major life change, Fiona is going through a very difficult situation losing so much hearing so quickly, now the support is coming. It’s good, I just wish that when a parent says my child needs sign language support the school districts would simply say, “O.K. you got it”.
It’s been a very difficult journey. The whole IEP process, Fiona’s ear infections and her losing more hearing, the fears, the sadness. The worst thing this week was when we were at the doctor and we were all talking about Fiona in front of Fiona and she didn’t have on her right hearing aid so she couldn’t understand what we were saying but she knew it was bad because of our faces and our energy. How sucky. I still feel so sad about that now. Since then I’ve really tried to talk to her about the doctor’s visit. I played a game with her, I pretended I was the audiologist and made beeping sounds and Fiona put the blocks in the bucket, just like at the audiologist, but I pretended she got everyone! She was so happy. Unfortunately, we need to go to the head and neck doctor Monday, we were just there in January and Fiona did not like it. It was very sterile and scary. Then on Wednesday I have an ADR, an alternative dispute resolution meeting with SELPA and the school district. Maybe it will be cancelled because if the expert changes her recommendation to Fiona needing and interpreter then I have no conflict with the district?
I have been working hard on my 50/50 paintings for the Sanchez Art Center and studying my Spanish. That’s going well. I’m so glad I have those things on the side.
4 thoughts on “Shifting, changing, losing hearing, gaining sign language”
Love the art you shared with this! I hope they figure out what is best for her. She is adorable ♥
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It’s pure hell you are going through. I had audiologists tell me my daughter could hear and this went on for a year. She had a BEAR exam and I was told she was profoundly deaf. Then the audiologist told me my daughter was the most difficult patient she ever had in 35 years. I was telling the audiologist I thought she was deaf. I am a Registered Nurse and I knew she wasn’t hearing. God bless you , Mom. I can tell you love your daughter very much. Be strong. Get your daughter American Sign Language. Once she has language, she will bloom. She may need a deaf school.
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Man! Its so crazy, no one listens to the parents. Thank you for sharing your story!