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: baby with hearing loss
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(Fionas’ IEP. Having no childcare with twins.) It’s 2:25 Friday afternoon. I just heard Jack say “mama” shit! I just put them down for their nap, sat down to write and poured myself a glass of wine. Finally, a break. Maybe he’ll go back to sleep. This week went by so fast. I think the babies are already used to being with me all the time. With the lack of naps lately and no childcare we’re hardly ever apart. I didn’t have time for the studio this week. I know how much of a luxury it is to be able to afford help a few times a week. I can also respect my hard work and dedication to the studio. It is almost impossible to find the time these days without the help. So all my “advice” or “judgement about” other moms not keeping up with their own “stuff” has been thrown out the window. The only solution I see now is hitting the studio at night after the babies are asleep, but I’m too tired. The other option I’ve been contemplating is sharing my studio with the babies, setting up a corner for them. I just think they are still too young. They put too much stuff in their mouths. I think that can happen next year. I’m patient. I can wait.
Fiona had her IEP today, it’s a progress report given every six months to children in the Early Intervention program. She is doing really well, her language is developing, she is a great listener, and is really good about wearing her hearing aids. It’s so crazy because, not only do I need to be so aware and present because I have two two year olds, but one has hearing loss, which gives me an added consideration. I need to make sure she understands the questions that I ask and not just let Jack answer everything, because he will! I can never be on parenting auto-pilot, I have to be constantly on guard, engaged, managing, aware, at all times, on both levels. Dealing with twins and having a child with hearing loss. It’s intense. But they are great, I love them so much. We get along so well and have so much fun. I went to the Zoo with a dear friend of mine yesterday, she was with me every step of the way through all the years of infertility. Every time we talked on the phone for ten years she would ask, “Are you pregnant?” Once I said yes. But then I had the awful miscarriage. I used to get mad at her for asking me all the time and encouraging me to keep trying, to do anything and everything. Yesterday we were talking, it was her birthday, we had just found out Prince died. We were hit by the facts of “Life’s so short” She said “Aren’t you glad you did it?” (did everything possible to have the babies) I said, “Yes” and I am. Lots of women would tell me through the years not to have kids. “It is too much work” or “You won’t be able to be an artist” or “they grow up and don’t like you anymore” It is a lot of work, it is hard to get in the studio without help, and they may hate me when they grow up, (but I doubt it, we’re like three peas in a pod) but it’s all so worth it. There were lots of parents who said that too, that it was all worth it. And they were right.
It sounds like Jack went back to sleep! I’m stoked. When we were at the Zoo yesterday we went into the petting Zoo. They have goats, chickens, ducks, a donkey, a pig, horses, I love it there. We love it there. Fiona and Jack wanted to brush the goats, so they got their brushes. The first goat that came by us was Snickers, he was a white goat with long curled horns, short, with a big round belly. I started petting him and Jack and Fiona started brushing him. Then another goat came out with brown fur and blue eyes, Jack looked at her and got a little scared. The brown goat came around and all the sudden both goats’ faces were right by Jacks face, he got really scared and had me pick him up. I could only imagine what was going through his mind. I think he thought there were twenty goats all around his face! It was pretty funny. We went into the insect exhibit which was really cool. I thought they would be too young, but it was right up their ally. Before we went in I told them what insects they knew, “Potato bugs, caterpillars, spiders, ants, flies, bees” Wow, I thought, that’s a lot of insects! That might be our first stop next time we go to the Zoo!
There are so many things to do with little kids. It’s so funny, since I haven’t had child care one thing is for sure, Jack and Fiona are wiped out by the end of the day. They’ve been going to bed by 6:30 or 7:00! I make sure I keep them active, we spend most of our time outdoors getting dirty. The other thing they’ve had to do is go grocery shopping with me. That really tires them out. And there’s the nap factor. They take way less naps when I’m with them. Not by my choice!!! I think they just don’t want to miss out on any fun. Now they’ve been sleeping for an hour and a half, the question is should I wake them up so they’ll go to bed early? Or let them sleep risking a nine o’clock bedtime? MMM! I feel good though, even though I had brutal insomnia last night. I’m feeling OK.They’re awake now!



