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.
Tag: Total Communication
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Peppa Pig on the T.V., Jack and Fiona watch with earnest while they eat their breakfast. I sip on my second cup of coffee; too sweet, a bit cold. Rain drops splatter on the window panes, another rainy February day. Billy lays at my feet with her messed up leg that didn’t heal in the two weeks it was splinted. The vet says I need to go to an orthopedic veterinarian now, five hundred dollars later. I don’t think so, how much would that cost? I think Billy will heal in time, and she’s learning to get around on three legs. It’s one of those situations, I find myself questioning my decision about not going further to get it fixed right, is that cruel? But then the trauma of going to another vet and being put under and possibly having a surgery and a cast for who knows how long. Poor Dog. I miss her so much, our hikes. I can’t wait until she’s better.
Today is my day off, babies at the indoor park, called “The Pavilion”. All I want to do is chill out and work in my studio, but that’s not in the cards today. Today I need to work on Fiona’s IEP; meaning read it, understand it, tweak it a bit, as well as fill out paperwork for the San Rafael Public School System. It’s stressful and exciting and emotional. Jack and Fiona are turning three years old! Going through this transition process, my time ending at Early Start; a second home to us for the past three years. Early Start has been my support system, my early childhood development learning center, my therapy, my community. The teachers at Early Start are my family, the other moms and kids in the program, I wouldn’t have made it without them. I feel so fortunate to have this support, it has been so important to Fiona’s development. This is a public program our taxes help pay for, it’s one of those programs that if Betsy Devos had her way, she’d probably cut it, (That’s just my guess, and my fear.)
This week, as I was visiting preschools, and doing my research about deafness, hearing loss, and learning environments I started imagining Jack and Fiona out in the world, alone without me or the teachers from Early Start for the first time. I had to envision Fiona in a preschool program with twelve other kids, and Jack too. But Jack can hear and he is an outgoing, rambunctious boy. I’m sure he will have a bit of separation anxiety, and a bit of fear probably being in such a different type of learning environment, one for typically developed kids, but he’ll be fine. When I envisioned Fiona in that situation I was saddened. I realized right away she would be missing so much. I talked to one of the preschool directors, I asked her, “Will the teachers know her hearing aid batteries are dead? Will they make sure she understands what is being said? Will they do any direct teaching?” The director said, “No, we teach to the group, we don’t do any individual teaching. Fiona would need a shadow teacher to get the best of both worlds, being around typically developed hearing peers and learning what her peers are learning”. I’ve been told since; the director isn’t allowed to say this to me, it’s discrimination, but I appreciated her honesty.
This morning I was sitting with Fiona and Jack listening to Peter, Paul, and Mary, “It’s Raining”. Fiona was sitting in front of me, Jack to my side. I realized the lyrics were available, so I started singing, Fiona turned her head and looked at me intensely as I sang. She could have easily kept looking at the lyrics on the phone or just listened to me, I was directly behind her, but she looked me in the eyes, focusing on my mouth and the way the words came out. She had her hearing aids on, but she still wanted face to face contact. In the IEP Fiona’s goals are heavily focused on auditory/oral only. For example, the speaker talking to Fiona with their mouth covered so she must focus on the sound of the words only with no visual cues. Doing this type of exercise in a loud in environment or in a group. Limiting her visual cues. There is no talk of “Total Communication” in Fiona’s IEP, (yet!) because I was told there is no need because that is how the class she is entering is taught anyhow. I want to add goals that must do with Total Communication because that it how Fiona communicates. That is definitely her preferred method of having a conversation with someone, learning a story, singing songs. Fiona thrives using a mixture of sign, visual aids, sound, everything. I totally understand wanting a hearing-impaired child to develop their oral listening skills by any means necessary, using hearing aids, getting cochlear implants, if applicable, because we live in a hearing world. There is little education taught to the general public about communicating with deaf and hard of hearing people, sign language is not encouraged, in fact I find that sign language is discouraged more than encouraged. Why wouldn’t people be encouraged to learn sign? Hearing and hearing impaired? It’s a curious one. People are always talking about all the new technology that will be available, “Making people hear again”. I know we can never know the future and speculating isn’t the best thing to do, but I often think about Fiona’s future, I wonder things like “what if she decided she doesn’t want to wear hearing aids all the time?” Or “What if her hearing gets worse over time and her hearing aids don’t work anymore and she chooses not to get implants?”. For these possibilities alone I feel it is in our best interest to focus on total communication now and forever.
Dirty Laundry Blog by Jennifer Hynes 