Total Communication and Hearing Loss

The middle of February, Saturday, mid-morning. The neighborhood is quiet, echoes from children’s voices are silent, the park empty. Airplane engines rumble, a weed blower buzzes. Birds chirp as the sun is covered by a thin cloud. A cool breeze blows and a dog barks. It hasn’t rained in weeks; the drought continues in California. My dog sniffs around me, looking for a scrap of my tuna sandwich I just finished eating. My house is quiet. Jack and Fiona are at the park with their dad. I needed this break. The month of February this year has been a period of rapid change for me. Fiona’s ear infection is still not better, she still winces when I put her hearing aid in. The second bottle of antibiotics smells disgusting. Even before I open the bottle I get nauseous. Tomorrow is the last dose.
Last night we went down to do story time and bath time. Fiona took off her hearing aids to take her bath. Often, it’s so late and I only have energy to read one story before tuck in time. I usually don’t put back on her hearing aids unless we are going to be reading for a while. She asked me to put them on last night. “I want my hearing aids on” she said. We were all already sitting down and half way through the book. I was too lazy to get up and get the hearing aids. “Tell me about this page” I said. The book was Mouse Count and Jack and Fiona started counting the mice and telling me things about the pictures. I was able to sign the whole story. Fiona and Jack both paid attention to my hand shapes and Jack practiced the signs. Only a couple months ago whenever I would practice signing Jack would say, “No don’t sign mommy, don’t practice sign.” I think he was jealous because Fiona used to practice with me when I first was learning. It’s wonderful to see Jack using signs. He’s such a cool brother.
I am moving on to the Intermediate section of the SEE sign curriculum. I remember when Fiona was a baby and I was first introduced to sign I knew I wanted to become fluent. When I first started to learn words I said to myself, there is no way, I’ll never learn this, and take care of twin babies. It was difficult and frustrating. I always had one baby in my arms, at least! Plus, dirty laundry, or a diaper, or food. I tried to use my baby signs I was learning, but it was difficult. It worked best during a meal time when they were in their high chairs. The first three years while Fiona was in the Infant program for kids who are deaf, hard of hearing, blind, or have mobility issues I focused on the basics. I learned to get eye contact with Fiona any time I wanted to talk to her. I trained her to wear her hearing aids. There were periods, especially between one and two years old where she didn’t want to wear them, or she would take them off and take them apart. That was difficult. I had to crawl around on the floor listening for the buzzing sound to find them. I studied sign at Fiona’s school and learned many common words about daily routines.
When Fiona turned three years old she transitioned into the Early Intervention preschool program. I had to prove to the school district that she needed to remain in a Total Communication program, that sign was just as important as auditory education for my daughter and my family. One of the teachers came to my home to observe me, how I used Total Communication. I was so nervous I couldn’t remember any of my signs, I wasn’t very fluent as it was, at all! I had only been studying for maybe a year. I was afraid I would be forced to put Fiona in a typically developed preschool, the school board had emphasized to me how important it was for children with hearing loss to learn language from their peers at school. I visited regular preschools and knew Fiona would not be able to understand what anyone was saying most of the time. The environment was too loud and chaotic with one teacher to 12 kids. (they have an assistant teacher too) I proved my case and Fiona was admitted into the Early Intervention Preschool last February.
On Friday I have my IEP (individualized education plan). I am not nervous as I was last year. The sad truth is, what Fiona and I have discovered this month, is that she can’t hear. Well that’s not accurate, she can’t understand what people are saying to her unless everything is optimal. She makes due, she’s amazing. We have a birthday party to go to today and chances are she won’t understand what any of the kids are saying but she’ll understand enough to get by and have a good time. Her hearing aids help a lot, Fiona and I both are very aware of this. But the rule is, consistently if I don’t use all my tools I’ve learned in communicating to a deaf or Hard of Hearing person I will have to repeat myself to Fiona. It’s that serious of a hearing loss. I have a bad habit of talking to myself. Fiona asks, “What did you say” every time I do this around her. One of my good friends has hearing loss and when I talk to myself around her it drives her crazy! I must really work on this.
The recent ear infection has affected Fiona’s hearing more. It’s like that ear is almost deaf now. It’s been frustrating and emotional for Fiona. So, at the IEP next week, I want Fiona to continue in her current class. It’s very important for her to be in a total communication class. But she’s turning four this month, only one more year of preschool. It’s scary, I know she’ll be fine and she’ll do great at regular school. Most kids with hearing loss do fine in school. But it’s a hard road, it’s not easy and auditory only, unless the child has a mild hearing loss and the amplification really helps a lot, I don’t think is a good idea ever. There’s a lot of focus on speech therapy, which is awesome, but I still notice in the way many of Fiona’s words sound that she’s deaf. Every word that has a letter that has a frequency she can’t hear, she says the way she hears it. She can’t hear many letters even with her hearing aids on, I think. Speech therapy trains children to memorize the sound of those words so the child can pronounce them correctly, and spell them too. It’s a lot of work. I haven’t been the best at focusing on Fiona’s speech at home, I feel like I’m pestering her, or pressuring her.
I use the signs to reinforce those letters, like F and P. I use signs to reinforce what I’ve said. Sometimes I say the sentence first. Jack always understands the first time. Then I repeat for Fiona, then I use my signs to reiterate a third time. This always does the trick. In the real world there won’t be many people who will take the time to communicate with Fiona in this fashion. I even get frustrated and exhausted keeping up with this every day all day long. But then I feel guilty. Poor little girl, she’s the one with something different than everyone else. Something that makes life that much more challenging. So, I guess I’m not as nervous about this IEP because I know what Fiona needs and I’m sure she will be able to finish preschool at Early Start. This is the best thing for her. I also know that I will continue in my sign language studies becoming fluent with Jack and Fiona right there with me. As they get older our house will be a Total Communication household just like I planned from the beginning. Fiona will always have a safe place to come where people understand and support her.

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Thoughts on Motherhood Through the Eyes of an Artist