Next: Octopus!

by Alexa on October 27, 2008

My mood over the past week has swung wildly. One minute I am misty-eyed over the outpouring of support we have received and the wealth of resources available if Simone does have a hearing loss, and the next minute I am hit with a wall of fatigue at the mere thought of everything before us.
Come, experience my neurosis in real time!

12:00 p.m.: ASL is a beautiful language! Each sign is like a tiny visual poem! This is going to be SO MUCH FUN!

12:03 p.m.: IT IS ALL TOO MUCH TO BEAR.

12:05 p.m.:
I still remember how to sign the alphabet! And the word “shrimp!” The sign for “shrimp” is adorable!

12:06 p.m.: PANIC ATTACK.

12:12 p.m.: We’ll be able to mock people’s outfits right out in the open!

12:15 p.m.: Simone will think I can’t possibly understand her because I am hearing. Sayonara mother-daughter relationship.

12:16 p.m.: A teenaged YOU’LL-NEVER-UNDERSTAND-ME phase is a given, even if Simone can hear dog whistles and the flap of butterfly wings. I will woo her back with cash and my recipe for piecrust!

Keep in mind that for all I know, as I raced around researching Deaf culture and reading about the ototoxic drugs she was given in the NICU, Simone could hear every word I was muttering under my breath. But anyone who has been reading this site for any length of time is aware that I could teach my very own Community Ed class called Getting Ahead of Oneself: Advanced Proactive Anxiety Techniques ($40—bring your own paper bag to breathe into), so this is perfectly in character.

I have received so many wonderful comments and email messages from people involved in the deaf and hard-of-hearing community, and I have every confidence that Simone can grow up to be a wise, funny, amazing woman regardless of whether or not she can hear. I am frankly baffled as to why I reacted so strongly to something that, rationally, I know is FAR from disastrous, when in the past year I have frequently handled actual disaster with much less brouhaha. The only explanation I have come up with is something about a straw and a camel, and that after the long siege of the NICU and oxygen and everything else, I am just bone tired. That phrase has never seemed so perfectly apt.

Anyway, babies are mysterious. After the initial appointment, there was a lot of surreptitious clapping and squealing and dropping things to see how Simone would—or wouldn’t—respond, and the results of this VERY SCIENTIFIC testing were inconclusive. Once, Simone startled to a clap, but the elephant noises made by her bouncer, the sound of a mooing cow keychain, rattles—all left her cold. The bouncer incident came during my lowest point. We have had this contraption for ages, but no batteries for it, so on Friday we got some and Scott set it off. A great deal of infant-pleasing noise, meant to sound like a rainforest haunted by a mad xylophone, ensued. Any baby would have turned to see what was making all the ruckus—any baby but Simone, who didn’t notice it at all. I reacted poorly.

BUT. Simone has a favorite song, one I made up because I couldn’t remember the words to Oh I Wish I Were a Little Bar of Soap (Why WOULD someone wish to be a little bar of soap? Hence the unmemorableness of the lyrics, I suppose). Our song—Oh I Wish I Were a Little ‘Lectric Eel—has many, many verses, but Simone likes the first one best. I tried pretending to sing it, complete with animated facial expressions, and got no reaction, while an actual performance elicited a wide smile at the first instance of the word “eel,” just as it always does. So who knows. Until the 5th, my daughter remains a puzzle wrapped in an enigma wrapped in succulent baby flesh.

In the meantime, I’ve taught myself the sign for “eel.” Added to the sign for “shrimp,” I am assembling a nice complement of language relating to marine life.

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{ 62 comments… read them below or add one }

Erin October 29, 2008 at 11:04 am

Of course, you are worrying about this. After all you’ve been through, even much smaller things will probably freak you out in the future. That’s the way it has been for me since Isaac’s early birth and 99 days in the NICU.

I am certainly no expert, but I wonder if it could be a combination of hearing loss and sensory issues. NICU babies like ours, get very good at blocking out the sensory stuff that overwhelms them. Isaac has always had mild sensory issues, and seems erratic in his reaction to sensory input and stimulus. Sometimes he will notice the very smallest sounds (the ice maker for instance) and other times he will block out or not respond to sounds that you can’t believe he would be able to ignore. Maybe the check up was overwhelming and sensory overload for Simone, and her way of handling it was to block out all of the noise and commotion.

Just a thought. By the way, Isaac has never qualified for therapy based on his mild sensory issues, b/c they are so mild when measured on the questionaires, but I do think he has them and they affect his life.

Erin

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Linda October 29, 2008 at 1:06 pm

You are a fantastic mom. I mean, here you are, upset about her diagnosis, but moving forward at the same time.

If you want to see the signs for Halloween in honor of Friday, here ya go:
http://www.youtube.com/watch?v=ODGc1K_tifQ

My daughter loves these videos.

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Alyson October 29, 2008 at 1:27 pm

Platypus. http://www.wikihow.com/Say-Platypus-in-Sign-Language

fabulous.

and someone up there said that a program won’t let the kids sign – don’t do that. bad idea.

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Amelie October 29, 2008 at 1:37 pm

Thank you for sharing. Thinking of you and Simone.

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Mrs. Moose October 29, 2008 at 3:55 pm

Your reaction is completely understandable. No one wants to hear that their child might have difficulties, etc. and after your year of craziness leading up to the beautifulness that is your daughter, totally understandable that you might be a bit freaked.

That being said, my own daughter who is 8 months old and doesn’t have the history of Simone is picky about the things she reacts to, too. The dogs barking hysterically? Nada. The phone ringing, yes.

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sarah October 29, 2008 at 7:33 pm

hi alexa,

i’ve never before posted a comment, but i read your blog often & just wanted to let you know that you and your family are in my thoughts right now. and gee whiz it’s true, this week’s photo of simone is breathtaking – what a charming looking kiddo she is. being raised by such a smart, funny, loving woman (and dad!) – i just have a feeling that it’s all going to be okay for you guys. like i said, you’re in my thoughts.

sincerely,
sarah

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Jordan October 29, 2008 at 7:45 pm

Oh Alexa, I have been reading your blog for a few months (branched out from other fantastic bloggers like Julia, Julie and Dooce) and wanted to say that I have been thinking of you and Simone SO much since your last post. Whatever the outcome, you are just such a great writer, fantastic mother and amazing person, and I can tell that Simone is and will be an amazing, compassionate, funny person as well. So many of us out here are wishing you and yours the best. Please keep writing, it really makes a difference.

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Katy October 30, 2008 at 11:52 am

My favorite sign is the sign for turtle. It’s so cute and wuggly. There’s another marine life sign to add to your repertoire. Good luck with everything.

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Allie October 30, 2008 at 12:53 pm

I’ve always heard the “little sip of coke” verse with “little keg of beer.” But my mother was a little warped. ;)

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sarah October 31, 2008 at 11:49 am

has anyone suggested cochlear implants to you?

simone would likely be a candidate for them. there is a center in seattle, washington… i feel like you live in oregon.

anyway, cochlear implants. find out all about them. i don’t know anything, but my mom is the director of the national centre for audiology up here in canada, so she knows a thing or two… and her colleague and close friend is one of the premier researchers in infant hearing and assistive devices. so if she says simone can hear again, i believe! anyway, ask about it during your appointment. just a thought. :)

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Clare October 31, 2008 at 3:15 pm

Oh I just found your blog. I know only a bit about hearing loss. When I did my grad training in speech therapy there was a really amazing clinic for families with young kids with hearing loss run by David Lutterman. I didn’t participate, but I loved that it was a mix of choices. Some families were going down the Cochlear implant track, some not, some doing mostly sign, others mostly speech, and most a mix.

But the one thing I did learn is that all the parents found their child’s hearing loss to be a really hard piece of news. No matter how much they said ‘its only hearing’ it doesn’t matter that they could think of worse things, it is a huge blow and nearly every single parent said ‘I can’t believe I didn’t spot this.” In fact many of them were having a hard time because they felt that they were grieving more than they should as it was ‘only hearing’ but that is a HUGE thing to take in.

Take care of yourself, find other parents to talk to when your ready, and make sure that Simone learns language and communication – that is the important bit. I think it is great that you working in gestures and signs. Ok no more assvice from me:)

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Sarah P. November 1, 2008 at 4:39 pm

I love your blog. I have lurked for a long time but never commented (at least not that I can remember).

I am coming out of lurkdom not to offer profound words of wisdom, but rather to say, “Check out the sign for ‘helicopter’. It is almost as cute as shrimp.”

And also, I love your writing. :)

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