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Yesterday was the big day. Hearing Aids Day. Also my little brother's birthday. A great day.
I woke up and rushed around the house getting Paula and myself ready, packing literally twenty pounds of snacks in case Paula should get hungry leading to cranky during our appointment. I spritzed and combed Paula's hair for the very first time ever. For the first time ever she had really bad bed head and needed a spritz and comb.
I took video with our little digital camera (you may request a cd with this video and I might send it to you before Paula goes to college). First the bed head, then the combed head. In the carseat, then on the road - yes I realize that's dangerous. That's why it was a very short shot. Then the waiting room; the spread of hearing aids and equipment all over the table; the first time in without them on; the testing to verify last month's results.
Then the moment of truth, taped on the extra memory card Joel insisted I take with me. I put one bright purple hearing aid and purple-and-white-swirl earmold in one little single-pocked seashell ear. The audiologist Claire put the other bright purple hearing aid and purple-and-white-swirl earmold in the other little single-pocked seashell ear, and together we turned them on.
Big smile.
Big smile. Smile.
I said Paula's name and she turned toward me.
I sang, "If you're happy and you know it clap your hands!" Clap! Clap!
Hearing aids! That's what they're called. Then why do I keep saying,
"Paula, I'm going to put your earpieces in."
"Please don't suck on your earmolds!"
"Hold still for a minute while I put the thing in your ear."
She has been tolerating them pretty well, I'm happy to say, but of course it would be too much to expect her not to occasionally tug at them, decide she's had enough, surreptitiously slip one out of her ear and into her mouth.
But it hasn't been too bad. She takes them out, I attempt to put them back in, clumsily. There's a trick to it and I don't think I've really learned that trick yet. If she resists I just put them away for a while and try again later.
Fortunately Paula likes having things stuck in her ears. It's weird, but good.
When I looked forward to getting the hearing aids, I didn't expect them to be so much work. Every night they must be dehumidified in a little case with desiccant. Every morning they must have wax scraped out of them, wax brushed off of them, wax puffed out of them with a little green puff syringe shaped like an egg. You would think scraping or brushing or puffing would be enough, but no. You must do all three.
You must listen to them to make sure they are working, using a little stethoscope they provide to you. You must test the batteries. On some days, about every 10-14 days, the batteries must be replaced. The batteries come in little circular packs like birth control pills. I wonder if that's a coincidence.
All the hearing aid supplies are stored in a little soft lunchbag-looking thing they give you that also comes with an elephant hand puppet, a book about an elephant getting hearing aids and an elephant growth chart. What exactly are they saying to my child? You have hearing aids: never forget. Or: You are dangerous in a stampede.
Whatever the subtle message, I feel like people are now trying to figure out how to approach the proverbial elephant. My friends Mary and Jacqueline came over for brunch today and were telling me that their kids didn't get it about Paula's hearing aids. I told them not to make a big deal out of it. Why should they make a point of explaining it? If the kids want to know what she has on her ears, they'll ask. Otherwise why should it matter? She's the same Paula they've always known.
I have new glasses. I realized after almost hitting an emergency vehicle with its lights flashing that I'm not seeing so well out of my right eye. Saturday I went for an eye exam and picked up my new specs today.
It's amazing to see clearly after getting used to seeing poorly. After my eye exam I became aware how I really only clearly saw things on my left while driving. I learned I'm nearsighted, with my right eye worse than my left. My focus was left of center and everything on my right was basically, as the saying goes, out of sight and out of mind.
Putting on the glasses I looked around in amazement. Things looked so clear! Who knew the ceiling above Sam's Club optical department was so well defined.
I can tell my brain isn't quite used to the change yet. It's like a steering wheel that pulls to the left. No, I remind my brain, I can see right now, too.
I'm hoping this is how Paula will experience her hearing aids when we first put them in her ears on Friday.
This morning Paula saw the little drawing of a violin on one of her alphabet blocks and mimed playing a guitar, singing her little hmm-hmm-hmm song that means music. When this kind of spontaneous communication happens, we celebrate. When she made the sign for "ice cream," we gave her ice cream for breakfast. This morning it was music, so I put on the "Yanni, Live at the Acropolis" tape, extra loud, so she could see and hear more violins in action.
Later in the car Paula was singing hmm-hmm-hmm again and rocking back and forth in her carseat. I wondered what song she's thinking of. Since I had no way to know, I put on some music we could both enjoy, Brian Wilson's "Smile." Listening to that joyful, exuberant music, with Paula rocking from side to side behind me, I wanted to keep driving for as long as it lasted. It felt that good.
When we got home I found our new DVDs had come in. They're called Signing Time, and they were created by the musician mother of a Deaf child, Leah. Leah and her hearing cousin Alex, with a host of other cute toddlers and young kids, demonstrate the signs for eat, milk, water, sleep, baby, Mom, Dad... You get the picture.
Paula lit up when she saw other young children making the signs she makes on a daily basis. "I know that one! They're talking like me!" was the look on her face. I have to admit I got a little teary watching her connect in this way with children she could view as peers. I particularly liked the little girl with the dark brown pigtails and purple ear molds. Paula sat enthralled through the video and then signed and said, "Again!"
The songs at the beginning and end are written and performed (sung and signed) by Leah's mom. The one that closes the video could only have been written by the mother of a deaf or hard-of-hearing child: Show me a sign, she sings. Tell me you love me, tell me that you're thinking of me, tell me all the things you're thinking about, day and night. Show me a sign.
As the credits rolled, Paula smiled up at the woman on the screen signing things Paula probably couldn't catch. She is learning to communicate. She is learning she can express herself to me and the world in other ways than shrieking or crying. She and I are finally enjoying each other, finally being together without constant frustration and confusion. Paula remained captivated by the images on the screen as tears of joy and the last traces of grief streamed down my face. Coco heard my sniffles and jumped on me, licking and nuzzling me like the mommy she is. My glasses got covered with her drool, but I felt much better.
I'm waiting, waiting, waiting for Lending Tree to return some quotes on our refi application. Dumdedumdedum. The site says it will take approximately 3 minutes. Mmm-hmm.
Three minutes from when is what I want to know. It's been almost an hour already! Three minutes from tomorrow at 8:00? Three minutes from my death of old age? Three minutes from the time I lose patience, turn off the computer and go watch West Wing, which I have taped and am DYING to see. Finally that duplicitous ass Toby admitted he was the one who leaked the blah blah blah blah. Anyway, how long can one realistically be expected to wait before going to see the beat down that Toby so obviously deserves.
We're refinancing now because, well, let's just say Joel's income structure is likely to change in the next couple of months. No, he's not quitting everything, dropping out of society and devoting himself to wearing nothing except live animals as hats - as attractive as that sounds. But as our expenses increase to include all of Paula's educational and therapeutic needs, our income is about to go down. So we're aiming to reduce those monthly payments by refinancing. Wish us luck.
As for the live animal hats, that's going to be my area.
This past week I've been stressing a lot about Paula's hearing aids, which we will get on Friday.
I don't know what to expect: Will Paula hate having the earmolds in, or will she not mind them after wearing headphones? Will she be easily overwhelmed by hearing things she's not used to, or will she be delighted to hear speech and music so clearly? When will she learn to talk?
I can't predict any of this, or if I tried I'm sure I would be wrong. So I'm trying to let go of my expectations, even my hopes about it. Just face it as something we're going to do, period. We'll just see how it goes.
Since last Friday I have slacked off a lot on Paula's speech therapy homework and just basically felt overwhelmed. But today since Joel is home I think we'll play the game I devised for our little playgroup with Laura and her boys.
I put a bunch of little toys into a bag, then pulled out all the ASL flash cards for those toys. Or maybe it was the other way around. Anyway, the game is we go over the flash cards to learn the signs, then take turns pulling out a toy and making the sign. Sounds pretty basic, but Laura's boys were really enjoying it. Paula was more interested in playing by herself that day.
So today maybe we'll play that with Paula and Joel. This morning I'm a little more in the swing of things already. Paula and I watched her "Your Baby Can Read" video and I signed along. Which reminds me, I need to look up the sign for "crawl."
Is anybody else as creeped out by Tom Cruise and Katie Holmes as I am? I had a dream the other night that the whole relationship and pregnancy idea was cooked up between Tom and the Scientology honchos to create some kind of experimental child-rearing situation in which the child will be raised in a "pure" Scientology environment and monitored closely as it grows.
All I know about Scientology is that it's closely related to Reevaluation Counseling, a neo-Maoist, sorta-Marxist, semi-culty peer-counseling thing I was involved with for a number of years. Basically L. Ron Hubbard and Harvey Jackins were friends who helped an acquaintance through a psychotic episode by listening to him. Hubbard started a religion based on the experience, Jackins founded a social movement of sorts. They did not remain friends.
That's what I heard, anyway.
Well, good luck, kid. You're gonna need it.
She's been asking for something to drink the way she normally does: looks at me with index finger in mouth, makes "Ummm" sound. Occasionally she makes the ASL sign for "drink," but not tonight.
I was looking for the blue sippy with warm tea in it. I gave it to her a little while ago and never saw it again. I turned to Paula as she asked, yet again, for something to drink.
I signed to her: "Where is the blue cup I gave you? Do you remember the cup I gave you?"
She pointed towards the living room where she had recently used the potty and sipped from a straw cup I found from earlier today. It had about two teaspoons of dilute apple juice in it, but apparently that was enough for Paula to drink while peeing.
I got up from the computer and followed her. She went to the straw cup and handed it to me.
"Do you want more?" I signed and asked.
"Mo! Mo!" she yelled, and excitedly made the sign. This is the first time she's said and signed it together, and the first time she's spontaneously used it in response to a question.
I yelled, too. "Yay! Good girl! Good signing! Good talking!" Then grabbed the cup and took off for the kitchen to fulfill the request before Paula got the wrong impression.
I started EC'ing Paula around 3 months of age and was immediately thrilled to figure out why she was crying approximately 1/2 to 3/4 of the time.
Our EC journey has been interesting, to say the least. I knew in my heart that tuning in to Paula's efforts to communicate was the right thing to do, but as she developed I felt something was missing and kept trying harder.
I am proud to say that when Paula was 7 months old I took her out of diapers completely. We used timing, cues, intuition, signing and every other possible tool I could find to give Paula a hygienic and dignified way to eliminate.
By the time Paula was 17 months old, I had been through the run-around with doctors and my insurance company, trying to get Paula's hearing tested and a neurological consultation. She was so sociable that my past fears about autism had receded, but I knew something was not right in the pathway to communicating with her.
At that time I decided to cut way back on EC. I put Paula in disposable diapers and gave myself a much-needed rest from absolutely anything non-essential. We retained the habit of having her poop in the potty, because as you know, THAT is essential.
Still, the summer was quite stressful with starting Early Intervention, getting Paula evaluated and dealing with my recalcitrant doctors and insurance. At that time Paula was also learning to walk, which I know would have complicated EC considerably anyway.
Finally in July we got preliminary hearing screening results: possible moderate hearing loss. In September it was confirmed. Paula has moderate-to-severe sensoryneural hearing loss in both ears. Now we are moving ahead with signing, will get hearing aids for Paula this month, and Paula is getting the appropriate therapies for her language development.
Now that things seem to be calming down a little, we're doing more EC. Paula is showing more initiative and I'm leaving her diaperless for a few hours a day, usually. I'm glad we cut back the way we did. I think I became much gentler on myself about just being human, imperfect and an okay mom. I don't feel so much like I have to cover every possible need Paula has at every single moment. I just try to do what I can and accept that she and I will be okay. I think I've also gotten a lot more respectful of other moms who make different choices.
I'm also glad Paula and I have done EC. I feel in my bones it has helped us build a foundation of communication that we can now build on with signs and speech therapy. I pay attention to her and she knows she can try to communicate with me. I think EC is a big reason we haven't given up trying to communicate in spite of her hearing loss.
That's our story so far.
This morning Paula's awesome speech therapist, Bo, a.k.a. Buffy to the grownups, rubbed lilac-scented lotion all over Paula's feet as she often does.
"Rub ... my ... feet," she sings, and emphasizes the Buh of rub and the Tuh of feet against the sole of Paula's foot. "Squeeze ... my ... toes," emphasizing the Eezz of squeeze and the Ohz of toes. Paula grabbed her foot away for a closer sniff and a taste of lotion-y foot.
"Bad," she signed, right arm straight, palm turned away, nose wrinkled, mouth pursed but smiling.
Paula's signing is picking up, and I often see her babbling with her hands, making signs I don't know for things I can't begin to guess. It's good.
She also continues to babble verbally as though imparting the wisdom of the ages to the babies, children, dogs, adults and air currents that swirl around her. When we visit Marylu, Paula can be seen sitting on her haunches facing little Neenah (almost 1 year old!). Paula places a palm against her sternum and addresses Neenah in earnest tones in words no one understands, least of all Neenah, I fear.
Lately she's been fixated on the dubbahdubbahdubbah series. I hear it minutes before she falls asleep and first thing in the morning. Dubbahdubbahdubbah.
But I think her verbal experimentation has been fueled by using her auditory trainer - that microphone thing that amplifies the sounds around her and pipes them into headphones. She wears it to watch her Your Baby Can Read DVD in the morning, to read the Baby Genius Animals book (in which she knows the signs for cat, duck and frog), and to watch Carmen or my current favorite, Sign Me a Story.
It's a lot of ongoing teaching, signing to her as much as I can, learning how to say things like "Maybe later," and "Time to go." Signs for zoo animals are only so useful in the course of day-to-day communication. And repetition is the hallmark of my parental creed.
I think our favorite thing lately is definitely swim class. We're not there to accomplish anything. We're there to have fun, period. There is no goal to be reached other than a pleasant half hour in the water.
So of course that's where big things happen. Today as we were playing in the water, jumping up and down, tossing her out of the water, into the air and back into my hands, I would pause every few jumps and sign, "Again?"
One hand is open, palm up. The other hand starts out open, palm up and then scoops air up, arcing over and ending with fingertips together in the center of the other palm. Eyebrows raised for yes-or-no questions. "Again?"
No response, for the most part. I sign it and say it a few times, then we jump some more. I make the sign for jumping (one palm up, the other hand making like a pair of legs jumping up and down on the palm), then repeat: "Again?"
And then, as though she knew what a big deal it was, Paula made the sign for "again," and on top of that she SAID "again!" I was so excited. "Good signing! Good talking!"
This is how I praise her. My fingertips touch my chin and make a brisk movement outward, then my index fingers make big circles like opposite sides of a wheel rolling toward me: "Good signing!" Fingertips to chin again, brisk movement out again, then index fingers point up and my hands alternate going out and back like conversational pistons: "Good talking!"
I saw the lifeguard looking at us with a big grin on his face. "Did you see it?!" He nodded, red-gold Anglo-fro bobbing up and down. Then Paula did it AGAIN. "Again!"
After all that excitement she only slept about 45 minutes, instead of the two hours I was shooting for. And tonight she was wound up and had trouble falling asleep. I called Joel (in the next room) on my cell phone from the dark bedroom as Paula babbled away to the spirits around her. "Any ideas?"
He said one night when we were weaning her she was screaming really loud so he started singing really loud to her. It worked, calmed her down.
So we sat in the dark together and sang Billy Bragg's "Little Time Bomb." It seemed appropriate.
Then, though she was quiet, we just wanted to be sure, so we sang Billy Joel's "And So It Goes."
In every heart there is a room a sanctuary safe and strong to heal the wounds of lovers past until a new one comes along
I spoke to you in cautious tones you answered me with no pretense. And still I feel I said too much my silence is my self-defense.
And every time I've held a roseIt seems I only felt the thornsAnd so it goes, and so it goesAnd so will you soon I supposeBut if my silence made you leaveThen that would be my worst mistakeSo I will share this room with youAnd you can have this heart to breakAnd this is why my eyes are closedIt's just as well for all I've seenAnd so it goes, and so it goesAnd you're the only one who knowsSo I would choose to be with youThat's if the choice were mine to makeBut you can make decisions tooAnd you can have this heart to break
We're changing Paloma's name to Coco. Paloma sounds too much like Paula. Now the dog comes when I call Paula, and Paula ignores me or can't hear me. And the dog ignores me when I say "Paloma," but Paula looks around like I just lit up a neon sign over my head.
So go back and read Monday's post, but insert Coco where Paloma is now. And when she gets up on the bed, say, "Coco!"
That's what the little girls used to sing at the school where I taught briefly in Guatemala. "Una paloma, punto y coma / fue al parque, punto y aparte ..."
"A dove, period comma / went to the park, period paragraph ..."
Well, I'd like to introduce our new little "dove," a lovely girl pit bull we've named Paloma.
Paloma is the probably the prettiest dog ever. She's white with brindle spots, one ear white and always up, the other brindle and drooped over. She is sweet, friendly and clearly just exhausted from being in the pound in Kankakee.
I got her today from the Bully Breed Rescue organization here in Chicago. She was going to be euthanized on Saturday, because I guess they just don't adopt out pit bulls from the pound. Some people at the pound called Bully Breed Rescue because this girl is just so sweet-tempered they couldn't stand to see her put down without at least trying to find her a good home.
Her temperament was tested like crazy: ears pulled, food taken away, tail yanked. Poor thing. But she passed with flying colors, and now we get to see if she'll be the right dog for us.
We're just fostering her for the time being, but hoping that as we get to know each other things will click and we'll be able to go ahead and adopt her. If things don't quite click, we'll keep her and take care of her until an adoptive home can be found. I really hope that won't be necessary.
Anyway, if I knew how to post pictures here, I'd put up one of that beautiful face. But you'll just have to imagine it and smile.
And we finally started telling Joel's family about Paula's hearing loss. I'm glad we waited until we could talk calmly about it because they needed quite a bit of reassurance.
My father-in-law said he suspected something when Paula kept making talking-like sounds but not saying words. He got a little choked up about the whole thing. My mother-in-law seemed to handle it pretty well once we assured her Paula is not deaf... Neither Joel nor I know how to say "hard-of-hearing" in Spanish. (If you do, email me!)
We'll tell the rest of the family today at this afternoon's planning meeting for my in-laws' 50th wedding anniversary.
I ordered Paula's earmolds in purple and white swirl, her hearing aids (the part that goes behind the ear) in purple. It's a good color for her.
This week was a good week. We made it to both swim classes and had a ball splashing in the water and chasing a kickboard around. I found out one of the other moms in the class lives two doors down from Joel's and my first apartment, right on Lituanica in Bridgeport. She was even traumatized by the same dentist who installed my permanent fear of dental work. Good old Dr. Arnstein: crazy, shaky and armed with a drill.
Four of the five days this week we had medical appointments of some kind, but they weren't all bad. Monday we had another sound field test for Paula. They tested her hearing at more frequencies than they had before and it's looking like her hearing loss is closer to the moderate-severe range.
Actually, there's a little bit of a disconnect between the audiologist, who says Paula's hearing is in the moderate-severe range, and the ear, nose and throat doctors who put it squarely in the severe range. Ummm...
Anyway, Tuesday was our doctor-free day and we went shopping at my new favorite store, Unique Thrift Store at 51st and Kedzie. LOVE IT. I bought about 12 new outfits for Paula for just under 25 bucks. That's what I call cheap fun.
Wednesday I took Paula to the pediatrician because she says "ow" all the time and makes the ASL sign for pain. I think it's her stomach, but I really have no way of knowing. I ask her where it hurts and she looks away like she's moved on, why haven't I? The pediatrician said I should keep a journal of when she says "ow," but frankly I'm not sure that whatever it is is bothering her enough to merit my attention. She makes the sign but doesn't seem to be in any real discomfort. I can't figure it out.
Thursday I had my annual exam, at which time I spoke with my doctor, the wise and wonderful Shilanda Hays of Homefirst Health, about my great and powerful mood swings, bad temper and propensity for crying with only minor provocation. She took blood to test for thyroid problems, directed me to send away for a salivary hormone testing kit from Mark Drug, the temple of natural pharmaceuticals in Roselle, Illinois. We'll see what comes of it.
The funny thing is that this week I've felt better than I have in a long time. Maybe it's the homeopathic Sepia I've been taking for last weekend's cold sore, or maybe the exercise, maybe the lunar phase, maybe just good luck. It was weird to be talking about how down I've been while feeling remarkably perky. Anyway, like I said, we'll see.
Friday Paula and I finally met the ear, nose and throat doctor, Dr. Williamson, who presides over UIC's ENT clinic. I like this man. He came in and said to me that Paula is rapidly losing her window of language acquisition. He said we need to get her into hearing aids as fast as possible. He called down to Audiology and arranged for Paula to get ear impressions for earmolds, and told the audiologist to order her hearing aids. Paula will technically borrow them until we get the funding in to pay for them. It was refreshing to finally talk to someone who feels a comparable level of urgency to what I feel.
The difference is that this dude has the authority to do something about it. Thank goodness we finally talked to someone who can make a difference.
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