Total Communication and Hearing Loss

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.

I’m going to Enjoy living until I die

I’m going to Enjoy living until I die

I did it! I successfully dropped Jack off for his first day of preschool! It worked out perfect because Fiona didn’t have school today, so she got to “come check out Jack’s school”. To make things even cooler, I pulled them to school in their trailer with my bike.  It was a quick ride, which felt shorter on my bike than in my car! It’s the most beautiful day ever, again! Fiona and I stayed for maybe fifteen minutes, then I told Jack we were leaving. He said he wanted to go home, but didn’t cry and when I told him the teachers had a special box of toys for this situation, Jack and I hugged, and said “I love you” and we went our separate ways. Fiona was a bit clingy, on our walk up the hill; she wanted me to hold her hand but I couldn’t because I was pushing the bike. I felt guilty for not being able to comfort her, but I had to tell her to toughen up. The transition is complete! Operation Twin Separation a success. I’m using my bike for commuting again, Jack and Fiona are in preschool programs, the birds are singing and the sun is shining. The perfect way to start my birthday week!!!

Yesterday after we got home from our bike ride, our first one, that was SO fun, Jack, Fiona, and I hung out in the back yard. They got their clothes off as quickly as they could, I filled up the kiddie pool, sprayed them with the hose, and gave them popsicles. It felt like I was in a dream. The warm air all around me, watching the birds in the tree’s, babies playing nice, Spring time. I had a dream the night before, two women were singing, “Oh how the world has changed”, then they kissed. I was in a deep, restful sleep. I felt joy, I felt hope, I felt that the world had changed for the better, a deep change. When I woke up I felt re-born, my brain felt amazing. I was so relaxed, it was like all my anxiety was gone, I felt normal. It was the night the clock moved an hour forward. I have been re-born with the spring, shed a layer. Last night the moon was bright yellow. It cast light on everything and shimmered through my bedroom windows. I didn’t sleep as well last night, but am still relaxed.

I want to live in peace. In peace with myself. This is my birthday wish. I am happy and appreciative of my life. I spent so much time worrying about dying, I’m looking forward to spending the rest of my life enjoying living until I die. To let go and be free of the fear of aging, of my body changing. To be free of self-consciousness about this vein or that brown spot.  To not obsess over my heart, to know I’m doing the best I can and that’s good enough. I’m ready for fun again. I am ready to honor my anxiety, my difficult times, accept them as they come and move through them because there is always light at the end of any tunnel.

Three Years Old! 

Three Years Old! 

How can it be? Three years old today! Angels stop! STOP growing!! Jacks soft little foot rests on mine under the kitchen table. A sweet warm layer forms between our feet. I haven’t put on Fiona’s hearing aids yet, I keep feeling guilty. It seems like she’s fully enjoying Peppa Pig anyhow, and her peanut butter toast. Another thing I feel slightly guilty about, no special breakfast on their birthday. Haven’t made it to the store lately.  Fiona wants a second piece of Peanut Butter toast! I guess this proves things don’t need to be elaborate to be special!  

Three years old today! It’s hard to believe. And with their birthday comes my birthday right around the corner! Another year older myself, but I don’t feel it this year. I used to spend so much time worrying about how old I was. Not before I had kids, or started trying to get pregnant, but once I started the clock started ticking bigtime. When my mom died I really felt my life was speeding by and death was around the corner for me too. When Jack and Fiona were born I was fourty two, quickly turning fourty three! When they were babies I had moments of feeling self concious, like people thought I was their grandma. Lately I haven’t had any of those feelings. I feel like my age is perfectly matched with Fiona and Jacks age.  

We went to the San Francisco Aquarium yesterday; Alan, Danny, Jack, Fiona, and me. It is a beautiful Aquarium. I paid close mind to the noise level; for example when we got to the Jelly Fish exhibit a woman was talking on a Microphone, it was so loud I asked Fiona if she wanted me to take out her hearing aids. We used sign language together, teaching Danny signs along the way. It was really cool! When we got to the tidal pools it was a bit quieter so I put her hearing aids back on. Fiona was fearless; touching the sting ray, starfish, and a king snake. Jack was scared! 

We have the week off, no babysitter! Probably won’t get much time in my studio this week, but that’s O.K.. I’ll make up for it threefold when they are back in school. We have so much more time in life than we realize! 

HAPPY BIRTHDAY JACK AND FIONA! I LOVE you dearly!!  

They’re Two! 

They’re Two! 

We made it! Jack and Fiona are Two years and one day old. They had their big birthday bash yesterday, and it was great! I said I would never have a birthday party, that we would only celebrate as a family. But I went to a friends birthday party a couple months ago and my mind was changed. It was nice, the kids had so much fun, I enjoyed hanging out with the other moms, so I decided then I would have a party for Jack and Fiona. 

  Jack was so excited about the bouncy house! He knew he was getting one for his birthday, he’s mentioned it everyday for the past several weeks. Each day I’ve told him how many days left until his birthday. Fiona hasn’t verbalized as much about her birthday as Jack. I’m not sure if it has to do with hearing loss or personality. 

I noticed when people started arriving Fiona stayed on the sidelines.  It seemed the other kids with hearing loss did the same thing. It took them all longer to warm up. It must be overwhelming.  

Spring is definitely almost here, only four weeks to go. The California Red Bud has flowers and the Sycamore Tree is starting to grow leaves. After yesterdays successful party I’m looking forward to many more as the weather warms up! 

Today is a studio day, after I clean up the mess from the party! Painting! 

First, time to make breakfast and get up my two year olds!! 

(This is them after the party was over)

   

Two one year olds walking and my birthday

Two one year olds walking and my birthday

Brutal. Remedies not working for ailments. Bad period. Morning is here. I’m 44. Why do I still have cramps? Turn on the kettle. I need to go downstairs and get babies. So glad I dressed Jack and Fiona in pajamas without feet on them last night. All I have to do is change their diapers and bring them up stairs. Make my coffee, make some toast. Bottles made. Feed babies. Have breakfast and write. Need to take Billy for a walk today. Feel like going to see Wild Tales again. Bleeding too heavy to go for a long hike or yoga. Feeling sore and tired. Cramps. Going to get babies now. Put on toast. Babies squawking. Don’t listen to them any more while they whine. Block it out. Babies twist and turn as I change their diapers. We have our bottles, toast, coffee, bananas and cheerios. I’m excited to put on Fiona’s hearing aids for the first time in a week. Babies want to go play. I was just about to write how sweet they were being right now, they were so quiet so I peered out into the play area to see what they were doing. Jacks looking at a book, Fiona’s, “SHIT”, Fiona’s got a bottle of milk, the one I couldn’t find last night. It’s upside down spilling all over the place. Jack runs over and takes the bottle and starts drinking. YUCKY old milk. Jack has a poop, I take him to change his diaper. I hit his head on the side of the changing table. His face turns red, the deep inhale, he cries, I hold him and walk back and forth, putting extra entertainment in it.  “I’m so sorry Jack, are you OK? I’m so sorry.” Is it almost nap time?

“OK, let’s make the bottles, go downstairs and call it a day. I don’t care what time you guys wake up in the morning. I just need a break”. Today was difficult. I’m bleeding, I got cramps, a raging head ache and no remedies. Vicodin should definitely be given to me for this time of the month. I can’t ask my doctor. He’ll think I’m a druggy. It’s my birthday. We have a roughish morning. I wanna have a special birthday with the babies. Babies won’t take their nap. We manage to get out of the house by 10:30 and arrive at the discovery by 11:00. Who cares what my doctor thinks, I should just ask anyhow. It’s the first time I’ve brought Jack and Fiona to the discovery museum since they can walk. I stayed away for the past two months because of all the flu’s and measles going around. I cancel my birthday lunch, I feel like there’s not enough time, it’s too much work making plans and coordinating with other people. (Moms lie so much. All I ever heard from moms when I told them I was having twins was “you’re so lucky, it’s so much easier with two. At first it’s harder but when they get a little bigger they can play together.” LIES, it’s ALWAYS going to be harder with twins) Instead of carrying each one into the Tot spot, plunking them down, running out to get the other one, I take Fiona out, set her on the ground feet first. She stays close holding the stroller while I take out Jack. He takes off. It’s exhausting already. I get both babies inside, there are lots of people here today. Jack and Fiona take it all in, they watch the kids running around. I’m getting annoyed. A nanny is trying to talk to me, “I’m definitely not going to be in this line of work when I’m 50.” She says. “It’s too exhausting.” (She’s watching one baby.)   I’m too distracted trying to keep an eye on Jack and Fiona.  I’m annoyed by the nannies on their cell phones, what are they getting paid for? I’m annoyed by all the parents and nannies who bring their purses in the play areas and leave them on the floor. Jack and Fiona want to get into all their stuff and take their water bottles. It’s just one more stressor for me. (Which today there are many) I don’t know what these people have in their bag, I’m thinking the babies are gonna take something out they can choke on. We go outside to Tot Spot adventure play area. It’s really cool with a tunnel, things to climb on, acorns, a puppet stage, and only one other person. We feel better out here, we’re nature people. We feel most comfortable around trees, the ocean, sand, grass, flowers and as few people as possible. I saw a great friend today. I was about to go home. Then I saw a text from one of my best friends who I haven’t seen in a long time. She is on her way to meet me for lunch. What a surprise! I still have time to have lunch. I feel so lucky, I am so happy to see Robin, the babies love her. I’ve missed her so much. I love her, she’s such a good friend.  I down my Moscow Mule and Truffle fries while the babies eat pieces of grilled cheese, berries and fries. Half their food falls on the floor. I pick up as much as I can and leave an extra ten bucks for the bus boy. This lunch really made my birthday. The babies were fun at lunch too. It’s like being at a table filled with rowdy drunk people when you’re with your one year olds in a restaurant. Except everyone thinks they’re cute.  People used to ask our table to “Please keep it down.” Now Jack can scream super loud and Fiona can throw stuff all over the floor and no one bats in eye. Maybe if I got drunk and acted crazy too we’d have a problem. Don’t worry if I ever do that I’ll call for back up. (Just kidding, I would never do such a thing.)

Wednesday Studio and Happy Birthday to Me

Wednesday Studio and Happy Birthday to Me

I’m not depressed, just melancholy. About all the time that has passed, all my life that I’ve already lived. How little time is left, how little time is always left at the end of every minute, every hour, every day, every week, every month, every year. The disappearance of time. In my studio today thinking about disappearance, things, people, life, fading away. Two hours, that’s about the amount of time I have to paint. I’m rushing around, I almost knock over a glass of water. “You’re getting crazy now, you need to calm down.” I say to myself. Green gold is a nice color, it was one of my mom’s favorites. I start painting, first a stain with watercolor, green gold. Some stained with grey. I think I like them, but I don’t know, I never can tell. Especially when I’m in these moods. My mind is cloudy, I keep hitting my toes and head on things. I hate when I have one of those ambiguous days in the studio. I get obsessed, I can’t think of anything else but the problems I’ve created, the search for the answers. But today is another day. A non-studio day. Time for a second cup of coffee. Today is my birthday, my 44th. Stumped. When my mom turned 44 she never would have thought she only had 15 years left to live. I’m being greedy. I want more time. I don’t want to die. Babies really show you how fast time moves. How quickly they grow. How can it be a year since my last birthday? Fiona and Jack were so small and sweet, only one month old. Last night Fiona stood in front of Jack and I. We were on the floor, I was putting on Jacks diaper. Fiona pulled the tab and opened one side of her diaper. Jack started cracking up and so did Fiona. I hope they don’t start taking off their diapers already and pooping and peeing everywhere. But that’s how fast they grow. We’ll have fun today, we have a great adventure planned and Fiona gets her new hearing aids today. She’s been without them for a week. That will be exciting. Happy Birthday to me.

Three Days Until The First Birthday

Three Days Until The First Birthday

Angel food cake, that’s what I’ll make. Nine egg whites, I’ll top it with strawberries. I have a memory of my mom asking me, “What kind of cake do you want me to make you for your birthday?” I said, “Angel food cake.” Betty Crocker or was it Duncan Hines in a box, just add water. But I loved it just the same. My first birthday is out of my minds reach and my mom died six years ago. My babies first birthday is a reminder of that. I feel the loss, I feel nostalgic. When I woke up this morning I thought how fast the night went, and can it really be another day? The first feeling was dread, all the chores, the cleaning, cooking. The next feeling was excitement about my morning cup of coffee, which I have begun to drink again against doctors’ orders due to my chronic anxiety and insomnia. I tried sneaking up the stairs but Jack called for me, I grabbed him, put him in his high chair, then Fiona. We all had breakfast together, it was lovely. I hadn’t even considered calling my dad to ask him about my first birthday.  Saturday I won’t put up any decorations and we won’t wear silly birthday hats. I never liked how the elastic cuts into my neck. I’ll make a cake and buy some ice cream. I’ll let Jack and Fiona dig their little hands into it and make the best mess ever.