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.

End of Naptime Paintings

End of Naptime Paintings

What thought do I start with. The small flying orange creature that just flew into my house, my notebooks laying out downstairs, almost bare. One piece of black handmade paper collage is glued on each page. I want to go down and work on them now. Jack and Fiona are not taking a nap. They are watching Toy Story. I can feel the naptimes are almost over. A little boy showed me his Dark Vader ice pack from his lunch box today as I pack up Jack’s left over lunch stuff. The teacher wants each kid to pick up their own lunch stuff. I’m the mom who comes in and picks up after her son. But I want to get to know his classmates, who he’s hanging out with. Jack spills a bucket of old daisies on the floor, they are dried out. A few sprinkled down on top of one of the girls sleeping mats. I pick up the flowers, leaving dust on the carpet, too difficult to pick up. A little girl asks me about the flowers. I say Jack picked them and brought them to school last week. He wanted to pass them out to the other kids. The girl and I talk about sewing the flowers together, making headbands. I tell the teacher she could use them to make prints. Two little ones are dosing off to sleep next to a teacher. They have their toy stuffies over their faces. I could tell a lot of them weren’t going to actually fall asleep. I put Jack and Fiona in their beds when we get home. I come upstairs. Hear them. Check on them. Soap all over the mirrors. They are not going to take a nap. I give them a bath. We read toy story and I decide to just play the movie for them so I get a break. The end of naptime. The end of naptime paintings and writings. It will now become something else. Some other piece of time carved out of motherhood. I will find it. Time will adjust. Now I have to go to my studio for a VERY SHORT TIME and make marks in my notebook.  

From this day forward, I will not cave to Undue Demands!

From this day forward, I will not cave to Undue Demands!

I don’t mind if you watch TV, this thought flashes through my mind as I sit at my laptop.  But I don’t turn on the T.V. yet. “Mama, look at this” Jack says. He’s playing with a cement truck with flashing lights. It reminds Jack of the Trucks outside working on the road in the dark with flashing lights cleaning up all the mud and dirt from the slide. It poured all night long, buckets of rain. Fast streams flowing down the hills all day, the creeks full to the top. The air warm, tropical. The moister feels good. I sit with Jack and Fiona on the couch, I don’t write. I read books, feed them more food, read more books. We’ve had an eventful day. Fiona is in the process of being transitioned into a preschool program for kids with special needs. (Is that how I should say it?) I don’t know, it’s so confusing. We have evaluations, school visits, meetings almost every day, calls to answer, calls to make. I am one step closer to the San Rafael Public School system; It seemed like this time was so far off in the distance and now here I am. Jack and Fiona are changing a lot. The most notable development is after months of being totally potty trained, they no longer are.  Fiona pee’s her pants and says she’s scared to go to the bathroom and Jack pee’s on walls and inside containers and poops in his pants. This is when we are all together, meaning I am totally available to assist, turn on lights, hold their hand going to the toilet, whatever they need. I try not to react when these accidents happen for fear that they will want the negative attention. “Undue attention, Undue demands”, I read about this in a parenting book last night and want to tattoo it on my arms. I can see where I have fallen into the trap of giving too much undue attention, especially in my conscious effort to always make sure I’m praising both babies equally. I can see how this has led me down a path of Jack and Fiona making “undue demands” on me, and I fall for it to avoid the whining and leg grabbing and all the other annoying behavior a three-year-old displays when he wants something. Today my mantra is “I will not tolerate Undue Demands”!

The windows are specked with rain drops, the sky grey morning dawn. It’s 7:08AM now. I just heard Jack call for me. I am drinking my too sweet coffee, enjoying my morning of solitude. I haven’t read or watched the news today, what’s the point. I just want the nightmare to be over. I want Trump and Pence impeached and Devos, Sessions, Tillerson, Bannon, the Alt Right, gone. Can’t we find an Island to drop them all off on? It’s awful they are in power of America. I am going to focus locally now. The wind is blowing outside. I will miss the rain when it’s gone. Just like I’ll miss Jack and Fiona’s chubby little hands and cute round faces. Now I hear Fiona awake. Time to make their breakfast and go to school. I hope I have time to work in my studio today, I started some pieces yesterday that I’d like to work on. I also want to start some more large canvas paintings. Life is good. It’s gonna get better too after I institute my new mantra to live by, “I will not cave to undue demands”.

We take a sip of coffee at the same time, playing footsies under the table. It’s 6:30AM, my Son and I.

We take a sip of coffee at the same time, playing footsies under the table. It’s 6:30AM, my Son and I.

Fiona sits on my lap, leaning the side of her head onto my chest as the audiologist looks in her ears, first the left, then the right, gently pushing a small piece of cotton with a string attached in each ear. Jack watches and pretends he is a doctor looking in my ears with a plastic toy. Fiona is perfectly still as the audiologist mixes the putty and squirts some in each of her ears. We sit and wait for the putty to harden. Fiona examines my hands. First, she holds my pinky fingers, then turns my hand over, running her fingers down the creases, spending extra time on a cut on my thumb, feeling the scab that has formed. Jack plays with the collection of toys in the doctor’s office that have now become familiar to him. I am in awe of the difference from the last time we came to get ear molds. Jack was all over the place, going behind the desk, under the desk, opening the door to the office, walking out, into storage closets. I had to keep going after him. I was expecting a version of this behavior today, but he stays quiet and respectful of his sisters visit to the audiologist to get new ear molds. Are we entering a new phase? As we play footsies under the table, I’m typing, Jack’s watching Blippi on the ipad. He has been waking up at the same time I do every morning. We both take a sip of coffee, (his is diluted with cream) I imagine us in the future having coffee together in some foreign country, maybe Cuba. Fiona is still sleeping, she needs a lot more sleep than Jack.

It’s a foggy morning, the greens and rust colors on the trees outside sit gently against the light grey winter sky. Last night we sat on the couch and listened to Christmas songs. We put a wreath on the front door that has red and gold decorations and LED lights. It felt good. This morning I have a couple hours of help, this feels good. I took Billy for her walk and took my shower, now I sit in my bedroom alone, quiet. I still have the lightness and inspiration from my walk. In the backyard, my eyes delighted by the colors, on the fig tree. The ground covered with large, beautiful, green gold leaves, some remain scattered on the light ash colored branches. I gasp, Billy looks at me, I explain to her the beauty I see. Does she understand?   We walk up the trail and the streams are finally trickling water down the hillside. I practice taking my deep breaths, feeling like I have all the time in the world, feeling calm. Is it my medicine kicking in? Is it just a natural shift in mood? Is it my detachment from politics? Something has changed. It feels good.

I have at least an hour to go work in my studio now, then more time during nap time. That makes me happy.

Liberation

Liberation

Liberation

Coffee; 12:21 Friday afternoon. Cold November night made way for a sunny day. First day able to be in my studio in a while. I stand an empty apple juice container up; Mold has formed along one side. Dark green with bits of brown. I am protected from the cap. I forgot to put a cap on my black acrylic paint the last day the babies took a nap, when I came in my studio to work and saw  on my “Never Trump” sign, “Never Give Up” imbedded in my message of Protest. I made it through yesterday: Parents meeting, (I was so grumpy I thought about not going, but it helped me so much). I told the facilitator, “I need to go back to therapy”. I took Jack and Fiona to the park. I let Jack eat Yogurt with his excavator, after he played with it in the sand box. I let Fiona smear yogurt on the ground then draw with her finger like I’ve been teaching her with various substances. I’ve been a great mom. I met a man this morning on the trail walking our dogs, I didn’t even wonder if he voted for Trump. I’ve concluded that it doesn’t matter anymore. With the men that Donald Trump has hired this week for Government jobs, it is crystal clear that this government philosophy, the power and masterminds behind it, has been in the making for years, forever, for as long as America has been America. There has been a strong movement towards peace, civil rights, and the environment, but that side hasn’t won yet.  After every traumatic, life altering event I am forever changed. My innocence and optimism concerning the world we live in and the human race changes. The idea of life itself. Sitting in the back yard yesterday with Jack and Fiona, we noticed a green bag that used to house the jumpy house hanging on the fence full. “Is the Jumpy house in there?” asks Jack. “No, remember, the Jumpy house got a hole in it”. I take the bag down and open it revealing forgotten toys. Jack grabs the Fire Truck and the plastic bat. Fiona didn’t run to the toys, she sits and watches me explain things. She asks me questions and repeats what I say. I see a tick on Billys face. Fiona looks close as I explain, “Ticks burrow into the skin and suck blood. They get huge and fall off. They have diseases, I need to get Billy some medicine”. Fiona follows me to the closet, up the step ladder behind me. Telling me about the tick, about putting medicine on Billy. Jack asks me about the bat. He’s noticing the line from the mold. “It’s made in a factory, that’s the mold line” I tell Jack. I wonder if I should show him a picture of children working in a factory in China making plastic baseball bats. A plastic baseball bat that sits in the back yard un-used for most of the time. That will never disintegrate, that bat will be on this Earth for the rest of time. I walk back into the house and pass the children’s easel with a pad and scribbles and crayons, I feel myself coming back. Emerging into my space on Earth. My reality. Glug, Glug, Glug. I just poured myself a glass of red wine. It’s 12:48pm.   I have a potential of three hours to work in my studio, if Jack and Fiona take their nap today. I miss sharing my naptime paintings on Facebook, but I am so relieved to be out of that atmosphere. I miss so many people on there too, seeing their up-dates, paintings, but I don’t miss the constant negativity, and look, it did us no good! We influence very few by posting the negative stuff Trump and his cronies do. I am going back to the drawing board. Back to before IPhones and Facebook. I have changed.

I Welcome All Good Things into My Life!

I Welcome All Good Things into My Life!

Kneeling on the cold bathroom tile, head over the toilet, muscles contracting in my chest, my back tightening, aching, body heaving; there is nothing left. I feel a warm hug around my back, it’s Jack. I sit up and sob. “I feel so bad” I say. “I feel bad I can’t be here for Jack and Fiona today” I say to Alan. He has stepped up today, his longest day yet taking care of Jack and Fiona. I told him this morning, “I might need to stay in bed today, up all night with the flu”. Wednesday it was Jack, Thursday Fiona, Friday me, then true to form Saturday Alan was on the couch with the flu; I was back in action. I missed Jack and Fiona on Friday. I missed our morning routine, our bed time routine, this was the first time ever to miss both. They understood though, they knew I was sick and they had some understanding of what it felt like; even though they are only two and a half and true empathy doesn’t develop for years to come, but I felt something, something I have taught them, to care.

Today I am recovered, Monday morning. Taking time for myself in my studio. I notice that “Creepy Kitty Lady and Scary Pumpkin Face” need more work. I white out the whole painting.  My hands are covered in paint; I should be wearing gloves. I re-work my “Creepy Kittty and Pumpkin Face” and love it. Lately I’ve been thinking ambiguity is the death of paintings. A painting needs a clear intention to be successful. That can come quickly or through tortured time, but when I paint something genuine I know. It might take time to know. Sometimes I think a painting I’ve done is really good, I post it on Facebook, then the next day I feel it isn’t right, I get a new idea to make it better, more specific. That’s the process. The process of painting. Which brings me to my “Book Project”, I am so stoked on my books. I am working on many at one time, experimenting with new ways of displaying them, it’s really exciting and so “Me”. I will be “un-veiling” my new series next October during my “solo” show! (hush hush-more details to follow throughout 2017) I am also planning on publishing my “Naptime Paintings” Memoir.  I will “un-veil” at the same time. My brother has taken the job of “editor” for “Naptime Paintings”.  I’m really excited.

I used to get so down in the dumps when I’d miss time exercising or painting from being sick or the babies being sick or just life getting in the way! Especially during PMS!!! I used to be SO much more filled with SELF DOUBT! I feel like I’ve really changed, it’s been gradual and hard coming, but I finally feel all my mindfulness practice is paying off. I can look at things now in a “general” way. I can tell when I start going down the rabbit hole and can stop myself. I don’t wake up and say “I’m gonna change my life: start eating better, start exercising more, do this and that better, stop doing this or that.” I’ve grown past that into acceptance of “the way things are at any given moment” and the way I AM at any given moment. It’s quite a change for me, and a welcome one at that. Maybe it’s an un-shedding. A letting go; A welcoming of good things, not thinking I don’t deserve them. The guilt, such a waste of emotions!!! I realized today I am taking “being a painter” as a real job! The sales I’ve made at my show at The Fourth Wall have really helped propel myself into this direction once and for all! I know I won’t “make the mortgage” or anything like that selling my paintings! But at least now my pieces are starting to be appreciated and taken to new wonderful homes and hung on new wonderful walls for people to enjoy!

Nap Time Part Two: Stream of Consciousness

Nap Time Part Two: Stream of Consciousness

It feels like it’s been so long since I’ve written. With an erratic nap schedule, erratic moods, erratic everything, erratic everything, I’ve given myself permission to lay off the S.O.P. and go with the flow of energy, absorbing the mind fatigue like a sponge in milk. Like the sponge I use daily to wipe up all the dirt and grime spread evenly through our house and car like green grass on the spring hills. My insides feeling pressure and pain as I battle like a trooper searching for relaxation, light, time, and a clearing of the fog of drama that has entered my delicate soul. True inconsistences between me and other parts of my world, the big beautiful cluster fuck of reality. But I sit here now within the fire, the burning of my bra, they did it for a reason you know, not just to protest for women’s freedom, but also because bras wrap tight around the ribs, digging in, leaving a red mark, insulating toxins, growing cancer, they knew it was just an extension of the Chasity belt. I’m not playing their games anymore, the games of patriarchy. That is what this comes down to for me, that erratic unease, unrest, dis-satisfaction with the system, with reality. My fight goes way beyond student loan reimbursements, I mean am I gonna get a refund for working full time, putting myself through college, will I get a refund of the money I used from my savings account that I paid for graduate school with? Fuck a phone call buzzing on my stupid IPhone, now my conversation is broken, now I have to check my message. What I’m proposing is a respect for myself. For my practice. I cannot be on-call. I propose a total respect for women. I want all the judgements about people based on their appearances, their dress, to go away. I want people to get off the fucken band wagon and think for themselves, I want the ugliness to go away. I want women to finally be viewed and treated as human, not sex objects, I want women to be able to walk around braless anytime anywhere without it meaning anything, it’s not slutty or dykey, or trashy. It’s our body. The only reason that our bodies are looked at in this way is because of advertisement, brainwashing, Barbie’s, look at what the world has done to women. We’ve been used and now we are paying for it. The bra has to go. Only wear during exercise when you don’t want jumping squirrels in your tops. It’s bullshit.