I went to Fiona’s IEP yesterday. Everything went smooth, she was offered the same services as she received last year, attendance at a Total Communication preschool and speech therapy. Fiona is right on track with most of her language skills. She’s having trouble producing letter combinations of letters she can not hear, which is normal for children with hearing loss. They must memorize how to make the sound through speech therapy, the hope is that they will eventually know how to make the sounds. I asked if it will be easier to do once Fiona can read and they said “definitely”. I mentioned Fiona attending a typically developed preschool a few days a week next year to prepare her for kindergarten and the representative from her school district thought it was a great idea. I said, even if Fiona can’t hear or understand a lot of what’s going on, I was reassured that it was still beneficial, socially and to prepare her for kindergarten, the hearing world. I had forwarded the piece I wrote about Fiona and my upcoming IEP to the meeting attendees. They commented they were surprised I had so much anxiety about the IEP. They assumed I assumed Fiona would get the same services again. I didn’t know. After I left the meeting I realized Total Communication wasn’t brought up many times, and when it was I was the one bringing it up. I didn’t have a chance to gloat about my graduation from the beginning series of sign class and that now I’m an intermediate signer! I am so glad I was introduced to sign language and that I had the opportunity to take a great class. It’s the best way to fully communicate with Fiona, using both sign and auditory. I realize they are preparing Fiona for the real world, and they do train teachers in mainstream class rooms how to best teach deaf and hard of hearing. The class room experience is adjusted to make it as optimal an environment for a child with hearing loss as possible. And I know in the real-world people won’t know sign language or that they must get eye contact with Fiona for her to understand what they are saying. Fiona misses things, constantly. I wonder, why should she have to be in a non- total communication learning environment at all? She’s going to have such a more difficult time learning the same material? Fiona can’t rely on her hearing aids and FM system 100% of the time. She deserves to get the lessons as efficiently as all her class mates. The only way that deaf and hard of hearing kids get equal education is with a deaf and hard of hearing teacher. This will give them the best chance of succeeding in college and getting a good job and making it in the hearing world.
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.
I’m look at my daughter. There are things that run through my mind; I’m so sorry you’re going through this, are you afraid your hearing is getting worse? You’re frustrated your ear is infected and it hurts to put on your hearing aide, you want to hear, you want to wear both hearing aids. I say some out loud and some thoughts I keep to myself. I realize how hearing is so important to Fiona, a part of her being, that can only be accessed through mechanical means. She is lamenting the loss of her hearing. She knows now what it’s like for it to get worse, which means she may understand a little better of what she’s missing. The loss of sound. Last night before bed she called me into her room, she was crying. “I can’t hear my voice, I want my hearing aids on”. I put her hearing aids back on. She tightens up, cocks her neck to the side and a tear comes out her eye when I put on her right hearing aid. Fiona goes through that pain, so she can hear. The wind is ripping outside. A storm is on the way. Jack and Fiona are both home sick. I’ve been caring for them since Sunday, sometimes worrying that they’ve caught that deadly flu that’s going around. What would I do? I’m also worried that I’m gonna catch it. They cough on me, wipe their snot on me, kiss me, touch my face and my mouth. I keep washing my hands and not sharing water or food with them. But I’m getting so tired from working so hard not to get sick and to take good care of them and get them healthy again and not end up in the hospital. Fiona’s ear infection should clear up without any effects once she finishes her antibiotics. But she will never hear well. I can’t do anything about it. I’m learning sign and she’s learning sign, but she doesn’t like to use it! She says, “Talk louder Mom”. Everyone complains that I talk loudly, I’m just trained to be asked to repeat and talk louder 24/7 so it’s engrained in me. It’s heart breaking to see my little girl go through these super adult, conscious, emotions of loss, missing something, acceptance, of having hearing loss, a disability. Yesterday at the park there was Fiona and her best friend who both have hearing loss, A boy with a sensory disability, he listened to music to stay calm, he walked around erratically at times, his mom followed him and took good care of him. There was a baby with downs syndrome, bopping around as fast as can be! All the kids integrated and played together. It was a beautiful but chilly day at the park. I sat in the sun even though I forgot to put on sunscreen. Children hugged each other and threw sand at each other, cried and laughed. Moms and Nannies watched the little ones, intervening when necessary. I was struck by the thought that this park life will come to an end in my life, that since I was a kid I haven’t been at parks this much, not kiddie parks with climbing structures, swings, slides, and scuffed knees. Childhood moves so fast, my childhood and theirs. What will my memories look like when I think back on this time in my life?
“Pajaro-cu-cu”, today I read this book to Fiona, this old book from my childhood, one of my favorites. I wonder, how did it even survive this long? It’s a book of “Animal Rhymes from Many Lands”, illustrated beautifully with what looks like monoprints. The book was published in 1967, this is the copy I have. We get to a page that has been torn out. The poem beside the missing page is about a horse. I tell Fiona I probably ripped it out when I was a little girl because I loved horses. She asked me “where is it now?” I wondered, where could it be? The ripped-out page of the horse from my childhood book. “Probably was thrown away” I say. Or in a box somewhere hidden away, lost and forgotten. It’s not here, it’s not in my house. I didn’t save it or protect it. Maybe it was left outside in the rain, in the mud. I am surprised at the language used in this book. It’s complicated and rich. It’s diverse and fun. Fiona and I carefully dissect the sentences. It’s especially challenging for Fiona because of her hearing loss. It’s difficult to put the words in context because they are such unusual combinations and ordering of words.
Fox with his sack is on a jog;
He’s taking cabbages to Prague.
Hare, quick before they’re out of sight, Pursues that sack rich with delight-
One for hedgehog, one his own-
He quivers at the thought alone.
Then sly fox speaks, his tail goes flick!
“Come over near, and take your pick.”
Fiona was so tired and not feeling well she went to sleep after this. She hasn’t taken a nap in a long time. Jack is sleeping too. I haven’t been into my studio in too long. I’ve been so busy finishing up my book and setting up my solo show on the days I had a babysitter and the rest of the days the babies have been underfoot, especially Fiona. They haven’t felt well and that’s always tough. I hear one waking now. It feels dark and gloomy today. I need more Pajaro- cu-cu!
A beautiful late June morning. Blue sky, cool breeze, I see a small bird on top of a tall tree, it just flew down, probably catching a bug. The chimes blow softly, I hear a chain saw off in the distance. My dog lays patiently on the floor waiting to be fed breakfast. My children are at preschool, my husband at work. In one hour, everything will change. Jack and Fiona will be home from school, the quiet will turn to laughing, playing, crying. A house of activity. Two paper plate turkeys still hang on the wall from last fall, Jacks is missing a gobbley eye. A few paintings they made last year hang next to the Turkeys, I can’t believe how long they’ve lasted with just scotch tape. Paintings that were created with little hands in a tiny moment in time. A moment behind us, never to come back. A moment of little babies making marks and eating paint. A moment so precious that we can never get back. The paintings now made by these young beings are becoming more conscious. They are not purely a chance to make a mess and explore the surprise of paint spilling and covering their little bodies, splattering and tasting. Sometimes now they even ask me to wipe their hands clean during a painting project. There’s still the occasional body painting.
I am a parent of children now, no longer babies; kids now who still need my full attention and love. When Fiona sat on my lap at the audiologist the other day, asking the doctor big girl questions about her hearing aid molds that were being made I was taken aback. She no longer sat there and just let the doctor squirt the mold making goo in her ears, Fiona wanted to know why and how. Her legs folded long over mine, her head right in front of mine. She wasn’t a baby I cradled in my arms trying to distract, nor a toddler I had to comfort, she was a big girl, still only three and a half years old, but aware of what was going on. I got a freight, I’m their parent, I thought. I have two kids. Having babies is one thing but kids? Strong, independent, smart, loving, kids. They are developing their own tastes and interests now. I balance between letting them explore and learn and grow and teaching them how not to behave without squashing their individuality or shaming them for doing things inappropriate in our society. It’s a difficult balance for me, I sometimes wonder if I would be considered a permissive parent. I hope I’m strict enough, I don’t want spoiled brats or entitled kids. It’s difficult to find the balance. At least I know they are loving and kind kids.
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.
Last night I see the moon, it’s big and bright. Beautiful. I have put the babies to bed and finished cleaning up. I’m relaxing on the couch, reading and writing in my journal. Now I am sitting at my desk writing. It’s been two days since I wrote the first sentence. Since then I’ve been in a world wind of politics and the rights of children who are deaf and hard of hearing. I’ve gone through and am going through so many emotions. Fiona has the right to learn and use sign language regardless of what the standardized tests say. See how that just jumped right out there. I am so mad, I just want to rebel against standardization! Nothings even happened yet except some conversations with representatives of the San Rafael School District and I’ve visited both public programs. I’ve had the recommendation to mainstream Fiona and to only do oral and no sign. This upsets me; when Fiona was born, and we found out she had a moderate hearing loss we were presented with a packet of information about deafness in children. (I will refer to people with any degree of hearing loss as deaf, that is what I’ve noticed in many of the books I’ve read) Anyhow in this group of information I was presented, the first question to answer is, “What mode of communication is best for your family?” I answer “Total Communication” right off the bat. That is using sign, speech, visual, the right environment, amplification, everything. I had to convince Alan though, he thought she was fine, that she could hear well enough, that she could rely on the hearing aids and didn’t need to learn sign. It took a long time for me to convince him it was important for our family to become fluent in sign. But today he gets it. I feel like the school district downplaying Fiona’s need to learn sign, both SEE and ASL, is stripping her of part of her identity. She’s also being put in a hearing world and expected to perform like a hearing child, at three years old. To deny her of a program that is designed for children exactly like her, her best chance at success going forward in the Public-School System, seems unjust. I am in the heart of politics, real life politics. I feel ashamed, I never read the Deaf and Hard of Hearing Bill of Rights until this weekend. And if they are trying to cut costs that’s really not fair, we pay over $14,000 in taxes to the San Rafael School district, we have paid over $80,000 in taxes in our lives together before we had any kids in the system. They’ve gotten enough money from us to send Fiona to an appropriate preschool for two years. I get it now. I understand what we’re fighting for.