AAC Awareness: I Am Not A Mindreader (And Neither Are You)

Are you (or your child's team) hesitating to commit to AAC because:

• "he has some words and signs and I can basically understand him most of the time"
• "he prefers to use his voice and gestures to get across what he's trying to say"
• "I spend so much time with her, I can tell what she's going to say in different situations"

Well, I've got some news that you aren't going to like, especially if you're the mom/dad of a child who can't speak . . . you are not a mindreader. No, you don't know what they're trying to say. Surely, you do some of the time, but the rest of the time . . . well, no. And, by guessing what your child wants to say you are likely assuming it's something simple (vocalizing and pointing at a toy becomes "I want that toy" instead of "I saw that toy at school today!") responding to them in a simple way that doesn't encourage higher level thinking or increased communication (giving them the toy vs. saying "Toy school? Are you telling me this toy was at school? Wow! Whose room did you see it in?") and getting stuck in a low-expectation, low-production loop. 

Plus, how annoying would it be if every time you pointed to an object to talk about it the default response was "Oh, you want that? Here you go."

This week's Throw Back Thursday post uses a concrete example about a school bus and an excited little girl and illustrates how easily (and seemingly correctly) I could predict what she was thinking/trying to say . . . . and then over a dozen ways that I could be wrong.

I Am Not A Mindreader (And Neither Are You)

   

This Shouldn't Even Be Their Choice

                                      knee scooter                         comprehensive AAC app

Imagine this: you've had an accident, and one of your legs was badly injured. You endure a period of rest and immobility, and then the time comes for you to get back on your feet---but you can’t. The weakness, the pain, the coordination issues . . . that leg is just not ready to do its job quite yet. You meet with a physical therapist and a doctor and discuss different tools that can aid your mobility, and you ask about the one-legged scooter that you have researched diligently online---it will take the weight off of your bad leg and allow you to move quickly, keeping up with everyone in many environments (let’s pretend you live in a fully ramp-accessible world for this imaginary scenario). You have been waiting for a long time to get off the sidelines and are eager to get the scooter, which can help you get around until you have your strength.

Imagine this: You are a child who has no speech, or very limited speech. You are frustrated (or rage-y, or sad, or dejected, or deflated) when you want things, or feel things, or want to comment on things, or have a question about something, or want to boss someone around, or need to get someone’s attention, or have something really funny to say . . . because no one understands. Or some people understand sometimes but then other times they are wrong and it’s not-really-even-worth-telling-them-they’re-wrong-because-you-can’t-figure-out-how-to-tell-them-the-right-thing-anyway. You meet with a speech therapist and a teacher and they sometimes are very fun but sometimes it’s all just hard work. Your mom comes to talk with them, and you hear them talking about something, some device, that will help you talk to people. You’ve been waiting for a long time to get off the sidelines and you need a way to communicate, effectively, with as little effort as possible, until you have the means to communicate with speech.

But then, something strange happens. They decide that you shouldn’t get the scooter just yet.

But then, something strange happens. They decide that you shouldn’t get a device to help you communicate just yet.

First, they aren’t sure that you can even use a scooter . . . they’ve never seen you even show an interest in scooting. They say that the scooter is so fast and effective that you may just lose interest in ever trying to walk independently. They think that you may just perseverate on the fun of wheeled scooter, spinning in circles, being totally irresponsible as you speed aimlessly around, never bothering to actually wheel yourself where you are supposed to go.  They think that the wheeled scooter is very complex, what with the moving pieces and the brakes and the features that need to be learned . . . and based on your previous interactions with them, they aren’t sure that you’re capable of managing it.

They think that first you have to prove that you’re capable of managing something without wheels, to work up the mobility hierarchy. It is determined that you will start with a cane-if you are successful you may graduate to two canes, then to crutches, then to a wheeled office chair (to be used only when you’re seated in your office, possibly to be expanded to home use if you are successful), then to the wheeled scooter. The wheeled scooter is a very good option for those who have mastered the other mobility options, but they don’t want to overwhelm you with too much speed and freedom. They’ve always given the cane first.

First, they aren’t even sure that you can use a speech generating device, or whether you would be interested. They say that an SGD is so stimulating and fun that you may just lose interest in even trying to speak with your voice. They think that you might just stim on the pictures and buttons and sounds of the device, hitting button after button and never bothering to learn how to actually communicate with it. They think that a full-bodied AAC device/app is too big: too many words, too many options, too much navigation . . . and based on what they’ve seen from you, they aren’t sure that you’re capable of managing it.

They think that first you have to prove that you’re capable of managing something no- or low-tech. It is determined that you will start with a low tech device with a field of 6 choices (to be determined by an adult who will pick the things that they want you to “say”). If you can manage a field of 6 it will increase to 12, then maybe to 32, and then (if you stay focused for a few months) possibly to something with a dynamic screen and more reasonable vocabulary size (to be used only at school during snack time initially, then also in circle time, and possibly to be expanded to home use if you are successful). The dynamic screens of AAC apps/devices are great options for those who have proven their capabilities, but they don’t want to overwhelm you with something too complicated from the start. They always give low tech first.

This doesn’t seem fair.

This doesn’t seem fair.

There are clear counterpoints to each point raised by the treatment team. First, it’s ludicrous to assume that you would prefer to scoot perpetually—managing the equipment, not being able to move with your peers as they cross uneven terrain, having to haul the scooter everywhere you go---the scooter is more work, and less ideal, than natural locomotion.  Next, you may spin some wheelies or race around as you get a feel for the scooter, but this is part of the process of learning how to navigate on wheels. Third, while the mechanics and maintenance of the scooter will take some getting used to, there’s no way of knowing if you can do it without trying (but you’re pretty sure you can do it). Lastly . . .  a mobility hierarchy? Really? Why in the world should you waste your time and energy painfully proving yourself on things-that-really-won’t-work-long-term, when you could already have the long term solution in hand? (or, in this case, under leg)

There are clear counterpoints to each point raised by the treatment team. First, it’s ludicrous to assume that you would prefer using a talker to speaking**-managing the talker, not being heard easily in crowded places, having to carry it everywhere you go---the device is more work, so much slower,  and less ideal than natural speech.  Next, you may press a lot of buttons to learn where words are located, but this is part of the process of learning how to navigate a speech generating device. (And even “stimming” on one word over and over is often a way of self-teaching that word and the melody of it.)  Third, while the navigation, transporting, and usage of the talker will take some getting used to, there’s no way of knowing if you can do it without trying (but you probably can do it, with the right modeling and support in your corner).  Lastly . . .  an AAC hierarchy? Really? Why in the world should you waste your time and energy painfully proving yourself on things-that-really-won’t-work-long-term, when you could already have the long term solution in hand?

Being able to navigate in your world seems like a basic human right. You are entitled to the tool you need to make this happen.

Being able to communicate is, indeed, a basic human right. You are entitled to the tool you need to make this happen. 


You tell the therapy team that their proposed course of action is invalid, for the reasons outlined above. You advocate for yourself and insist on getting the tool that you need. This shouldn’t even be their decision. You are the one who is dealing with this limitation, and your vote counts the most.

You don’t say anything. Because you can’t.

This shouldn’t even be their decision. You are the one who is dealing with this limitation, and your vote counts the most.

Except you don’t get a vote.

Every child who can’t speak deserves access to a full, robust, comprehensive communication system. If you have one of these children in your life*, you’re either on the team that is presuming competence and fighting for a big system (immediately), or you’re on the team that is standing in the way. 

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*Please note that I included the parent in the treatment team of the nonspeaking child. This isn't accidental. Sometimes the roadblock to a great device is a professional-but sometimes it's the parent who is hesitating.

**PS: And honestly, so what if an AAC user prefers using their device to speaking? There are reasons that AAC use is a better option for some verbal users sometimes (particularly in times of stress or exhaustion). Why should it matter how they choose to communicate, as long as they have the ability to do so?

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Related post:  The Gatekeepers, in which I discuss the AT evaluator that tried, twice to underserve Maya---the first time providing her with a low tech 32 button system, the second time trying to take her communication app away and replace it with something "simpler."

  

The Ghost of Playgrounds Past

The winter is ending, and the advent of spring has released dozens of toddler-and-caretaker pairs from their apartments and out to the playgrounds in our neighborhood. Will and I are one such duo, eager to get outside and play after a few dreary months spent indoors. Last year he was too small to really do much at the playground, and I had been looking forward to this season with him---big enough to run, steady enough to slide, mornings filled with fresh air and sunshine.

I knew that at the playground, I would be a first time mom again. Even now, Maya lacks the agility and balance, the self-protective reflexes and coordination, to explore freely at a playground.  I knew that Will’s playground abilities would develop rapidly, that his coordination and capabilities would be surprising. I knew it would be different, and I looked forward to that difference.

The playground was a loaded place for me and toddler Maya. It was bittersweet to the fullest possible extent of that word. The sweetness of doing something “normal”—not at the doctor, not at a therapy appointment, not doing exercises or assessments, just a mom and her little girl at the playground. But the bitterness (oh, the bitterness) of being different- leaving the safe bubble of home behind and seeing what other two year olds could do, could say, could eat, could . . . everything. They could everything. We sat on the equipment and watched kids race around us. She crawled, then walked with a walker, then walked with my catching hands nearby, and I was a focused assistant. She needed me so much. Will is already independent, running away, bidding me to watch and follow but shunning my help. So I watch and chase and play and smile and feel like I’m getting off so, so easy.

I didn’t anticipate that returning to the playground with a new toddler would trigger a visceral response---that type of physical memory that gets stored somewhere so deep that it’s beyond thought and ingrained on some sort of deeper, fundamental level. The way that revisiting the empty halls of your high school as an adult calls forward anxiety or wistfulness or nausea, or driving down the street that you grew up on kicks up the emotions of childhood. It’s not remembering, it’s re-feeling.

The moment I open the gate to the playground and push the stroller in the re-feelings start to rise, a familiar swirly tide of anxiety, determination, self-awareness, pride, sadness, protectiveness, bitterness, all pulling at my ankles. And then I look down at Will in the stroller, already trying to free himself from the straps and yelling “Uppy! Uppy! Uppy!” and I remember that I don’t need any of those feelings this morning. My feet are solidly on dry land, but the phantom tide feels strong enough to bring me to my knees.

I watch him play.  I’m on my knees.

I watch him climb and run. I wonder what the balance is between promoting independence and being neglectful, since Maya always needed me at her side, less than an arm’s length away. I side-eye the other parents, gauging the appropriate hovering distance.

I talk about typical kid things with typical kid parents. I’m an impostor, surely they can see that I don’t fit in.

I am amazed by his abilities, the way he moves and interacts. I narrowly resist the urge to look around and call to the other parents “Did you see that?! He did the slide like it was nothing! And look at your kid, climbing the stairs without your help! This is amazing! Are you soaking it in? Are you noticing? Are you waiting for the other shoe to drop?”

Because doesn’t this feel too good to last? Too easy?

Is this really how life is for most parents?

Do you people know how easy this is?

How lucky you are?

I mean, how lucky we are.

Where is the self-consciousness of having a toddler who doesn’t toddle? It’s over there by the swings, I think, where we would swing and swing and then sit in the shady patch with chalk and then . . . well, I guess we’ll just swing again. Where is the anxiety over rushing home and making it to the next therapy appointment? It’s right here, in the perpetual checking of my watch, in the way that I keep stopping myself from saying “2 more minutes” when I remember that really, we have the whole morning. Where is the awkwardness of avoiding small talk with other parents, talk of ages and milestones, favorite toys and favorite games, all seeming other-worldly? It’s there, by the park benches, where I used to feed her jars of baby food and try, so hard, not to overhear the conversations of the other caregivers. And it’s here, in the way that, without thinking, I avoid eye contact so as to not accidentally stumble into a conversation. Where is the angst, the sadness or frustration or this-isn’t-fair-ness that I would push down but remember later, in the dark, when I couldn’t fall asleep and couldn’t block it out any longer? It’s here, right here.

Oh, it’s here.

And I don’t know what to do with it.

Oddly, it hurts more now than it did then. Back then I was sincerely happy to take Maya out to the playground, and I was good at focusing on the positives and enjoying our time together. But now I see what it is like to be the mom I would have been, and I’m realizing that the playground experience that I had a few years ago was a shadow of the experience that I’m having now. And it hurts. I have pity for my mom-of-toddler-Maya self, and I have hatred for having self-pity. I have sadness that our experiences together were more difficult, more lonely, more stressful than my time with Will is going to be, and I have guilt over that sadness. I have happiness that I get to be the mom that I would have been, and I have sadness that Maya doesn’t get a re-do, that her one shot through those years is done, that she had her toddlerhood and it will be very different than her brother’s.

I thought this restart would be refreshing. It would be a chance to do motherhood in the normal way, to blend in, to not be set apart. But now, given the opportunity to blend, it feels like fraud. I find myself wishing that I had battle scars, visible and raw, something that would let people know that the my parenting path has not been theirs, it’s been thorny and rocky. A scar that is jagged, and fresh, but only occasionally slightly visible, peeking out from the neckline of my shirt when I move in certain ways. A scar that makes my outside match my inside, that relieves the feelings of fraud by giving a heads-up to the other playground patrons that though I am here having fun, not talking about my scar, I am nursing a wound. That I am sore, that it’s still a little raw, and that I’ve gone through something.

I’m going through something.

This is going to be painful, this business of reliving motherhood.

But I think that it’s also going to heal me, in some small dark places that I didn’t realize were in need of healing.

If you related to this, you might also relate to this (which is my favorite blog post, ever) and this (other playground reflections). 



    

Every so often it's time to cry again

Maya arrived home the other day with one thing on her mind: the school bus.  She was saying “school bus” with her talker, she pointed to the picture of the bus that hangs in the alphabet hallway (with the letter B), she told me “buh!” several times, and she kept demanding that we sing “wheels on the bus.”  Her method of demanding was very cute--she made sure that she had our attention and then rolled her arms round-and-round, just like in the song.  We sang, she acted it out, the song ended, she was delighted and wanted more.  Good times.

But I didn’t know why she was so suddenly enamored with wheels-on-the-bus, and it nagged at me.  Was she excited to be traveling on the school bus again after her week off?  Were they reading about a bus at school?  Does someone else sing her that song?

It was obvious from the way that she lit up when we started to sing that she was making some connection, and she couldn’t tell me what is was.  So after she went to sleep I emailed her teacher, Laura.  First, I let her know that Maya was newly obsessed with wheels-on-the-bus, and that spinning her arms translates as “let’s sing WOTB!”  Then I asked if they had done anything with that song at school.

I got the reply the next morning (I’m paraphrasing): That’s too funny!  Actually, I sang it to her yesterday at school, and then we all sang it later as a class!

I smiled reading it, understanding how much Maya must have enjoyed acting out the song with her friends, and how excited she was to keep doing it at home with us.   Then I started to cry.

God, how I hate that she can’t talk.

I hate that in order to figure out that they sang wheels-on-the-bus we had to go through a crazy multi-step guessing game: Maya acts out round-and-round, I guess that’s she saying wheels-on-the-bus and start to sing.  She lights up, so I know that I’m right. I sing and she does the motions and she is more delighted than usual, so I take her excitement as a clue that something more is going on.  I email the (luckily cooperative) teacher, who doesn’t mind my guessing games, and wait to hear back to gather more clues.  Finally, I find out that she sang it at school, and now I wait for the rest of the day to go by so that when I see her again I can say, “Maya, I talked to Laura!  She told me that you sing wheels-on-the-bus at school!”  Mystery solved!  High fives all around!  24 hours from start to finish.

Or . . .if she could talk . . . she could say “Wheels on the bus!” and we could sing together and I could say “Did someone sing that today at school?” and she could say “Laura sings wheels on the bus!” and then we could have a snack.  4 minutes, maybe, from start to finish.

I hate that I might be missing other hints that she tries to give me, other things that she wants to share.   I speak for her constantly, making connections and guessing.  When she enthusiastically points out a whale in a book, I say “Oh,  a whale!  That’s like the big whale that we saw at the museum!” . . . but what if she’s pointing at the whale because it’s blue? Or because a boy in her class wore a shirt with a whale on it today?  Or because they’re studying the letter W at school and read a whale book earlier this week?  How can I keep talking for her, when I’m really just taking my best shot at guessing what she’s trying to say?

I hate that it’s so hard for her.  And for us.  And while I love her easy (well, mostly easy) personality and I’m eternally grateful that she doesn’t seem to sense the unfairness of her situation yet, I’m so angry on her behalf.  I resist the urge to get down on my knee and look her in the eyes and say “this isn’t fair to you, you know.  Other kids have it so easy and you have to work so hard and even then sometimes I just don’t understand and it’s not your fault and I can’t do anything to help and I’m sorry.”  I try to be happy that she (mostly) doesn’t care yet because I know that someday she will and that will be another crushing thing.

I hate that for us to communicate there is a multi-modal full body exchange that needs to happen.  I hate that I have to guess.  I hate that I’m probably wrong a fair number of times and I don’t know it.  I hate when she gets angry and cries/whines/yells at us (which happens at least once a day) because we don’t understand and she doesn’t know how to make us understand.   I hate that here I am again, three years into all of this stuff, writing with a crumpled pile of used tissues on the floor next to me. 

Every so often it's time to cry again.

At least now I have three years’ worth of experience behind me . . . enough to know what happens next.  I’ve sang this song before, many times now.  I will cry angry tears and then they will change to sad tears and then I will be numb.  And when the numbness fades I’ll take the energy that’s beneath it and, with new gusto, throw myself into working on communication stuff.  Oral motor exercises and making Maya request things with sounds and working more and more closely with the talker and Speak for Yourself so that it will continue to become increasingly incorporated into the way she initiates communication.  We have a lot of tools and a lot of knowledge and have to keep doing the hard work of making it stick.  There will be productivity and progress until I reach a new breaking point, and then we will start again. 



Postscript: I finished writing this at 2:55pm. At 3:15 Maya came home and we got the mail, and a prototype keyguard for the Speak for Yourself app arrived, which is fantastic and will definitely help with Maya’s communication accuracy via the talker.  At 4:10 I became sure (after a few days of debating) that I’m starting to feel the baby kick.  So, I guess sometimes you get lucky and the time to cry passes more quickly than you would expect. 

We Are More Thankful Than You Are

(By "we" I mean parents of kids with special needs.  By "you" I mean parents of normal/ average/ typical kids.)

Ok, so thankfulness probably isn't supposed to be a competition.  And before parents of typical kids stop reading---or start sending hate mail---let me quickly say that for a few months I was a parent of a typical kid, and I sure was grateful.  I celebrated her first smile (right on track at 6 weeks), gleefully welcomed her first laughs (which we even have on video) and appreciated the heck out of my lovely, growing, happy, healthy baby girl.  Had some parent of a kid with special needs tried to tell me "We're more thankful than you are" I would have bristled like a porcupine, shot some eye daggers, and thought passive aggressive things.

But really, it's kind of true.

A parent of a typical child has the luxury of "taking things for granted"-a phrase so overused that it's worth taking a minute to really break that down.  In taking something for granted, one accepts something as a given or true, often without showing appreciation.  While all parents wonder and worry about the future of their child, the worries of a typical parent have an undercurrent of things-taken-for-granted.

• Will she get good grades?  Of course she'll recognize letters and numbers, and learn to read, and do math, and understand abstract ideas like weather and history.  And obviously, she will be able to hold a pencil and learn to write and sit in a desk and listen to the teacher (sometimes, anyway). 
• Will he play sports?   Of course he'll stand independently, and walk, and run, and jump, and climb stairs, and not need a walker or a wheelchair or a cane. 
• Will he be teased?  You know, not "when will he be teased" or "will he understand when he's being teased" or "will he ever have friends who will just accept him as he is" or "will he have the strength and resiliency to rise above the kids who tease him, because, oh yes, there will be kids who tease him."
• Will she get married?  Of course she'll have relationships and date and all that jazz.
• Will he go to a good college?  Will he stay on the path to college?  Of course he'll go through K-12 like everyone else, graduate high school and be college-ready, if that's the path he chooses.
• Will she make good friends or fall in with the wrong crowd?  Of course she'll have meaningful friendships and relate to other people and get phone calls from her friends and have sleepovers and hang out with people besides her mom and dad.

Parents of kids with special needs lose some of those things-taken-for-granted (some families may lose all of them, others may only lose select ones---like if their kid can walk and run just fine but may not interact with other kids).  Realizing that nothing is a given for your kid . . . not even the simple ability to someday say, "Hey Mom, what's for dinner?", well, it makes your heart implode. 

But then . . . over time . . . progress happens. 

When a new skill emerges you are thankful----and then you see that what you thought was truly "thankfulness" before was just a shadow of the real thing.  Like the way you think you've had good apples, but then you have one fresh from the tree and are like "Holy crap!  That's an apple!" or how you thought dial-up internet was perfectly great and then you got a modem and were like "Whoa---this is a whole different world!"

This is a whole different world.

Maya has been walking for nine months now, and to this day there has not been a single time that I've watched her walk/run down a hallway without think "I can't believe she's really doing it."  A week ago she started eating waffles by herself (she holds the fork in one hand and feeds herself with the other hand, but whatever) and it was the first time in 3.5 years that she's eaten a full meal by herself.  I didn't have to sit and feed her.  It was amazing. 

Walking down the hallway?  Eating a waffle?  These would, without a doubt, be things that my former self would have taken for granted from my typical child.   But I notice them, I celebrate them, I am thankful.

I am so thankful.

There are other things---stepping-stone-skills, I think---that are totally life altering for us.  When I first realized that Maya was learning to recognize letters, my entire world shifted.  If I were a typical parent, I might have thought:  Awesome---what a smart girl!  She's already learning letters.  Maybe she'll be an early reader, we could read stories together, etc

But as a special needs mom, seeing her recognize those first letters sent up a giant, shining, exploding firework-of-a-thought:  She will be able to read someday.  And then, not far behind:  If she can read, someday she will type . . . so even if she never talks, she will type and people will understand her. 

What a typical parent would mark as a stepping stone on the given-road-of-progress, I saw as a game changer. 

That difference brings with it a more profound level of thankfulness.  It just does.

2 years ago today, Maya had her brain MRI.  2 years ago tonight, we found out that her brain was normal.  2 years ago tomorrow, at the thanksgiving table, we were thankful for her normal brain . . . that's a profound level of thankfulness.

Yesterday we went to a "Thanksgiving Feast" at Maya's preschool.  The parents all came and brought food and sat with the kids and celebrated . . . and I noticed one of the moms excitedly chatting with the teachers and aides and watching something on the teacher's cell phone.  It was a video, taken by the teacher.  Earlier in the day, her son had taken his first unassisted steps.  Ever.  Her little guy has been kicking butt with his walker for a few months now, but yesterday he let it go and took a few steps.  And while we were there, he did it again, with both of his parents excitedly looking on.  He's almost 4 years old.

And I watched him take steps, and I watched his mom & dad watching him, for the first time, take independent steps and I thought about how lucky I was to get to watch that moment.  That moment that takes them from "I hope that someday he'll walk" to "He walked."  From hoping that someday he would be walker-free to seeing that there's a good chance.  From "Let's keep working towards independent steps" to "Let's work on more steps."

They are more grateful for those first steps than the parent of a typical child. That's just the way it is.

Happy Thanksgiving to everyone---near and far, old and young, typical and not-quite-as-typical.  For the parents of kids with special needs, I hope that you can look back over the past year and remember some of your own game-changing moments, big and small.  And for the parents of typical kids, I hope that you can look back at some of your stepping stone moments with fresh eyes and realize how much you have to be profoundly thankful for.
 

Just let me have the now.

My mind protects me from the wounds of time.  The past and the future are treacherous ground for the  psyche of the special needs parent.  My mind whispers, “don’t try to remember, that was so long ago” and “slow down, no need to think about that just yet”  . . . keeping me from looking too far into the unknown of the future, or from thinking back too far and hitting the naiveté of my past. 

Oh, the blissful naiveté of my past.

When I stop and remember, the memories have the clarity of home movies . . . I see my former self, this girl-who-I-no-longer-am, pregnant and happy and picking out names for her perfect baby, and I know that she will lose her carefree spark.  I see her become a typical mom of a typical baby.  She thinks about the future and smiles.  She gleefully says things like “By spring she’ll be walking! Can you imagine that?!”   But I know that in a matter of months, she will no longer just gaze at her child with love, but with the burden of reexamination, searching for “normal” and “abnormal.”  Now, she laughs and plays on the floor with her baby, but soon “playtime” will become “therapeutic playtime”, filled with objectives and practice.  Soon, she will cry at night.  And during naptime.  And when it’s quiet and she’s alone and starts to think. 

She will scrutinize and worry.  She will struggle to learn to speak the new languages of medical jargon and advocacy.   She will not be the same, and not in the gradual way that people mature over the years, but in the radical way of a sudden, post-traumatic shift. 

She is the woman that I was before.  Watching her is like watching a dog at the pound that wags his tail and yips excitedly all the way to the doggie gas chamber.  It’s heartbreaking.


Don’t try to remember, that was so long ago.


The future is equally emotionally hazardous.  Advancing towards the future is driving through a thick fog in the middle of the night.  I won’t be able to see where our road is leading until the sun rises, and there’s simply no way to make it rise any faster.  I drive slowly, rolling through the fog and listening to music and try not to think about whether I’m heading towards a cave or a beach.  Honestly, I don’t even want to know where this road leads.   If the final destination turns out to be a beach, I’ll celebrate when I feel the sand between my toes.  I will think back over the years, about my (now unfounded) fears of the future, and I will sit in the sun and bask in the sweet relief of ending up at the beach.

And if my destination is a cave, well, I don’t need to know that yet.  From far away, a cave is dark and grey, a dank place that might house bears or other monsters.   Driving through a dark, foggy night towards a cave is the stuff of nightmares. 

But standing in front of a cave when the sun rises?  Well, there’s enough magic there to show you that caves are misunderstood.  With tide pools and rock formations and echoes, a cave reveals itself as something surprisingly beautiful, entrancing even, but misunderstood by the masses.  We’re already well-versed in beautiful, entrancing & misunderstood.

If I need to, someday, I will learn about the beauty of caves . . . and I’ll share them with anyone who will listen.   But for now, I choose not to look ahead.  I have no way of knowing where our path will lead, and I don’t want to guess.  I don’t want to think about our destination.


Slow down, no need to think about that just yet.


I’m living for the now.  Now is the delight of a normal day at the zoo.  Laughter and love, hugs and finger paint.  Now is a new favorite animal, an inside joke between my girl and her Daddy, sticky, chubby ice cream coated fingers.  Now brings the joy of new successes, the shrieks of “you did it!” the eyes that fill with tears when I see progress right in front of me.  Now is proud---the pride of any parent who loves their child and watches them gain independence, baby step by baby step.   

Now is savoring this exact age and stage and place and time.   Right-at-this-moment-now is unburdened.


Just give me the now, please.  Just let me have the now.
 

I will not be her limiting factor

At the risk of becoming a one trick pony, I'm going to hesitantly start another post on communication.

Exactly a month ago, I posted about finally making the leap and learning how to use BoardMaker.  The timing wasn't accidental.  Maya had been toying with the iPad for the past 8 months or so during her therapies.   I had made a few picture cards here and there, but without much direction.  As the summer rolled on I told myself "When school starts, we will get a system in place".  It didn't seem to make much sense to create a system on my own when preschool (filled with lots of people-who-know-how-to-communicate-with-nonverbal-little-kids) was right around the corner.

School started.  I waited for her to find her footing.  I spent a few hours learning BoardMaker.  I met with Maya's teacher and speech therapist and saw the types of boards they were using at school.  I made some boards at home.

I puzzled over the fact that having a finite number of words available meant that I was chosing everything that Maya was able to say.  I hated that.  It didn't seem fair.

I made keep making the Word Book.  With it, Maya will flip through the pages, pulling off words and handing them to me, eyes lighting up with delight when I say "alligator?" or whatever word she's thinking.  She understands that the book lets her get her thoughts out.  She plays with the PECs (picture cards).  She's starting to learn how to point her way through "I want" sentences.  It's exciting-beyond-words that she's able to tell us stuff.

But it's killing me.

Something about seeing her latch onto this book so quickly (and I really mean "latch on"--literally and figuratively---she's taking the thing in her crib at night . . . don't take my words away, mommy, I might need them tonight) is simulatenously delighting me and breaking my heart.  She's so young and teachable and interested, and I've realized that the limiting factor is her communication isn't her . . . it's me.

Sure . . . it's her mouth's fault that she can't speak words, but it's my fault that she can't communicate.

She doesn't sign much . . . because I haven't followed through with continuing to teach ASL, since her signs are garbled and while I understand them, others won't.  So I just kind of gave up on signing, I guess.  It wasn't a conscious decision, it just  . . . happened.  She started making sounds and gesturing and taking my hand to lead me to things and most of the time, I understood her.  So it was easy not to use PECs regularly, or any real system----she understood me and I understood her and it led to kind of a lazy complacency. 

Now she's starting to use the PECs, and starting to use the iPad more (it's taking me time to upload pictures and format the program, but we're using it in baby steps) and she's learning.  She's interested.  The learning is slow, but it will come.

I give her something new, and she tries to learn it. 
 
  
I'm the limiting factor. 



If I don't make-it-for-her/give-it-to-her/customize-it/set-it-up then her communication is limited.  And it's limited because of me.


This line of thinking . . . well, it's not so good.  I've been throw into a kind of emotional spiral over this . . . whatever I'm doing, I don't feel like it's enough.  But it's certainly enough to keep me in front of the computer day and night, googling and searching and emailing.  It's enough to cut into my sleep.  It's enough to obsess over.  It's an unhealthy place to be.

And then I realized that I can turn some of this negative energy from self-loathing into just plain old loathing (and not that any loathing is ideal . . . but of those two, I'd take the latter).  I am angry at "the system" again. 

I want Maya to get a communication device.  A real one, a big one, one that she can gently be exposed to now and grow into and use for years to come.  I want it soon. 

I want it because Maya deserves it.

But, somehow, it's not my choice.  I can refer her for evaluations (done).  The evaluators will recommend the product that they think is best for her (which I've found to be a gross misrepresentation of her ability).  I can protest . . . but, well, you know . . . I'm "just a parent".  I'm not the professional.  How could I possibly know more about this stuff than the professional?  The device that she receives from the Board of Ed will most likely just be the one that the professional recommends, and then we wait while a year goes by.  A year!  In a year I think she could make some very nice slow and steady progress with a device.

I am educating myself.  I am emailing people-who-know-things about augmentative communication*.  I am leaving messages with representatives from the big companies*. 

I am thinking that we will likely try to pursue getting a device privately, because why-should-Maya-have-to-wait-for-the-Board-of-Ed-to-believe-that-she's-ready?   I believe that's she ready.  Or at least approaching ready at a speed of faster-than-a-year-from-now.


   

I will not be her limiting factor.




And I won't let the professionals** be her limiting factor, either.


 


And, just because I can't resist sharing the cutenes:

Roar!!!!  This little dragon can't wait for Halloween.

*To this end, if you know anyone who knows about augcomm, has a child with a device, works in assitive technology, etc, please email me: uncommonfeedback@gmail.com 

**Just to be clear, "the professionals" are not the people at Maya's preschool.  We love the people at Maya's preschool.  "The professionals" are the city evaluator people/BOE.

After the Airport: Reflections, and the Boats of Acceptance

A year ago I wrote Amsterdam International, about 6 months after I had left the airport myself. I was writing with enough emotional distance from my darkest point (a period of daily-tears-during-naptime, and racing-mind-while-lying-in-bed-at-night) to speak somewhat clearly about that rough transitional time, but while the memories were still fresh (and jagged) enough to hopefully do them some justice. I was attempting to say “This is the worst thing that I’ve ever gone through” and “If you hate life right now, don’t worry, you’re not alone” and “Someday, you will suddenly realize that you haven’t cried for a few days, and you will see that you’ve begun to (ever so slowly) crawl your way out”.   

I hoped that it would spread, and reach others who were going through their own dark times. And then I watched, amazed, as it did. A year ago I was awestruck as people (besides my mom) visited the blog, and in a matter of 3 days my daily page loads jumped from 67 to 421 to 892. I felt like I had contributed something, and at a time when I was feeling like I had lost some of my own identity (having left my career to manage therapies and appointments), that gave as much to me as any of my words gave to anyone else.

At the time, I was already grateful to be out of the airport, and I’ve spent a lot of the past year trying to spend more time enjoying the present, and less time thinking. (As it turns out, life is sometimes more fun with less thinking.) There didn’t seem to be much point to trying to envision what our future would be like in Holland, or worrying myself with particulars. I had already accepted that life would be different than the one that I had previously imagined, and I decided that while we would clearly have more struggles, we would also have more celebrations . . .and over the past year, we’ve had some great celebrations. First steps, first words, first bizarre adoration (hello, vulture), first glimpses into how smart and funny our girl is . . . we celebrate a new food with the gleeful smiles that some people reserve for opening presents on Christmas morning.

And I’ve enjoyed this about Holland-the joyful appreciation of minor things. I’ve come to welcome the slow pace of changes . . . by the time we got to walking, there wasn’t a little mom voice in my head lamenting, “Oh . . . my baby is growing up too fast! Slow down!” . . . there was just “Go! You can do it! This is amazing!” Progress has been made, and savored. In the airport, we were in a rush---a rush to fix things, a rush to change things, a rush to somehow alter the course of our unplanned reality-----but outside the airport, in acceptance, there is a peaceful happiness. In acceptance, things are . . . well, things are pretty good.

But I didn’t realize that this past year would teach me an unexpected thing about acceptance. There seem to be stages of acceptance, both as clear and as winding as the stages of grief had been.

Stay with me as I leave behind the airport analogy and switch to a harbor town. (I know, I know---Another analogy?! (eye roll) but it’s the best way I can think of to explain this.) 

The Boats of Acceptance

In this harbor town, the families with “typical” kids live on the land, and the families with “special/different/whatever term you’re cool with” kids live on the water. The families who are new to all-things-special-needs, who struggle to see which world they fit into, who still spend a lot of time in depressionangerdenialbargainingwailingpain . . . they sit on the beach. Not quite on land, but not ready to brave the water. And when they’re ready, they get to acceptance. And then they get their boat, to join those already in the water.

As best as I can figure, acceptance starts as a canoe. It’s tipsy, easy to capsize---but you’re so happy to be free from the limbo of the beach and enjoying the water that you don’t care. You paddle around thinking “This is working! I’m on a boat! I’m happy! This water isn’t so bad! “ But every so often you hear people playing on the shore and turn too quickly to see them----or you gaze too long at some kids playing in a soccer game close to the shore and you forget to row----and your boat wobbles and shakes and takes in a bit of water and you think that maybe you need to take a rest on the beach again. Just for a little while. 


It’s hard to learn to live on a boat.

It takes some time, but you become a champion rower. You can navigate turns, go superfast or smooth and slow, and the shore hardly distracts you anymore. You think to yourself “There are great things out here on the water. Those land people miss magical moments at sea.” You’re ready to drop your anchor and claim the water as your home.

So, you get a houseboat.

The houseboat of acceptance is strong and sturdy, built to last through the stinging winds and soaking hurricanes that you’re smart enough to expect in the years to come. And the best things about having a houseboat, docked securely at the pier, are the neighbors. You visit their boats and they visit yours, and you talk about the best places to buy rope and other boating things. So many people you might not have met on land, happy to help with ship repairs and barnacle scrubbings. You all have friends on land, but something is different among the camaraderie of people who live on the water---there’s a lot about boat living that the land folks just can’t fully understand. Life on the houseboat is good, you watch the tides come in and out and feel secure and proud . . . until you have to venture to land.

Going to land . . . well, it sometimes sucks.


You’re invited to a birthday party, or decide to take your kid to go visit the new museum, or whatever. You have high hopes. You’re ready to visit with old friends, to catch up. It only takes a few minutes to start noticing all the stuff that’s happened on land since you’ve been gone (they have flat screen tvs now? computers are wireless? what the hell is Twitter?) and suddenly all of the progress that you’ve made on the boat, the stories you were so ready to tell---they all seem very small. So small that you fearfully suspect the land people might put on too-big-smiles and too-cheerful-voices when they say “A new generator? That must be so fantastic!”

You may not be ready to be so close to land just yet.


But you want to shift from land to water, gliding from one to the other, at home on both, like the tides. The houseboat of acceptance, well, it may be home (temporarily? for a few years? forever?) but you watch the waves crash on the shore, stirring up the sand, and it makes you think. The water kicks up the sand and plays with the shells, lingers a bit, and then purposefully moves back out again. Maybe you could, too. Maybe you could join the land folks, move among them, and then return to the water . . . without the weight of misunderstanding/pity/envy/grief?

This is where a year has brought me. The houseboat is easy, the land is still sometimes hard (although there are easier days and harder ones) . . . and I’m ready to start rolling onto land with the waves (some days). I’m not sure how long it will take me to teach my body to switch from sea legs to land legs, and my visits might be short at first, but I’m going to go slowly. I’ve got a lifetime ahead of me to learn. As it turns out, the final, hardest to obtain, boat of acceptance is starting to reveal itself to me, and I don’t think it’s a boat at all.

I think it’s a surfboard.

   

   

He's just not that into us (doctor style)

Our genetics appointment last week came and went without much fanfare.  It was the same type of appointment that we’ve had a bunch of times now.

Part 1:  We meet with the assistant doctor (and med student/s, usually).  Update them on the past 6 months worth of appointments, discoveries, progress, etc.  Brief physical exam.  I present the new syndrome that I’m eyeing, my reasons for suspecting it, and the test that I think we should do.   (I feel like I'm pleading my case to a judge and resist the urge to take a bow when I'm through stating my case.)  Maya wanders around the room, investigating, searching for things to open/close/rip/crumple/make a mess of.

Part 2: The doctors tell me that she doesn’t seem like a typical kid with Xyz syndrome.  She’s too tall or too short, too nonverbal or making too much effort to become verbal, too high functioning (hey, that one was at least nice to hear), too stable on her feet (really?  Really?) or whatever.  I counter with “Yes, but I read that 10% of kids with xyz are able to walk independently, or that 80% don’t have cardiac involvement”, or whatever.

I resist the urge to throw up my hands and says “Obviously she’s not a typical kid with any syndrome . . . otherwise we would already have a diagnosis.  She’s an outlier.  Join me in thinking outside the box, won’t you?”

Part 3: “Ok, Mom, let me just go and consult with Dr. Hesincharge and we’ll come back to talk with you in a few minutes.”  Door closes, Maya wonders what’s going on here.  We play, and possibly probably shred the paper covering on the exam table.

Part 4: Dr. Hesincharge enters and reaffirms that Xyz probably isn’t a match, but we’ll run the test just to “cross our t’s and dot our i’s”.  I am happy that we’ll run the test, just to check.  Then he says  “So, after this test, there’s really not much that we can do here.” 

I deflate a little, and the deflation surprises me.  

Did he just break up with us? 

Dr. H:  It’s not you, it’s me.  There’s just nothing else that I can bring to the table here.

Me:  Uhhhh.   You’re, like, the doctor.  We need the doctor.  You’re supposed to diagnose things.  You can’t just quit on us.  Shouldn’t you be trying to piece clues together and read research papers and solve our mystery?

Dr. H:  All of the broad screening tests have been run.  I’ve done fancy test #1, fancy test #2 and even fancy test #3!  Then you wanted me to do test #4---even though I didn’t think she had Abc syndrome, so I did.  And now you want a test for Xyz, so I’ll order that too.  But there are, like, a LOT of other letters.  Clearly we can’t test for all of them.  And I could make you keep coming back once a year for physical exams, but I’ll be honest, I just have no clue.   So really, why keep up the charade that I’m actually providing any diagnostic care?

Me:  Ummmm.  This relationship really can’t be that draining for you.  Remember, I’m the one doing the legwork and the research?  But you have the fancy bloodwork forms, and the lab, and the hospital.  I can’t order the tests without you, man.  Don’t give up on us.  In a few months, I’ll start to wonder again.  And I’ll start to google.  And I’ll need your hospital lab and your bloodwork pad again.

Dr. H:  (Sigh).  Well, ok.  I guess if you need me, you have my email.

Me:  Thank you.  That wasn't so hard, was it?  And by the way, doctors shouldn't break up with patients.  Talk about literally adding insult to injury.  Sheesh.

That may be a dramatic elaboration, but the vibes in the room were similar.  “There’s really nothing else we can do here” is the doctoral equivalent of “It’s not me, it’s you”, I think.  (Although clearly, it’s not us, it’s him.) 

And I thought I really liked this doctor, too.  He seemed like a guy who would sink his teeth into the mystery of undiagnosed-ness and analyze all of the puzzle pieces with me, trying different things to see what fits.  But now I’m alone again.  Just me and the medical charts.

So I guess after the results of this test come back (3-4 weeks, but I’m not getting my hopes up) we’ll probably be done with Dr. Hesincharge.   We’ll settle into preschool routines and enjoy the fall and I might not even think about genetics for a while . . . but when I do, we’ll go back to the first geneticist that we saw (who was very nice, but also not very aggressive).  While he may have been a little more relaxed and slower to test, at least he hasn’t given up on us yet.

The Maya Handbook

I'm taking a break from a project I've been working on in my free (read: non-Maya) time today: a Maya Handbook.  A guide for her teachers/therapists to all-things-Maya.  It seemed like a great idea---since she can't talk, I'll talk for her in a pre-first-day-email. 


Frankly, it's turned out to be kind of exhausting.

I started with some simple stuff, like her general personality.  Summary: 1. She's delightful but stubborn.  2. She sometimes acts like she can't do things that she can (so don't let her trick you) 3.  She listens to and understands way more than you will initially be able to see, and 4. She'll do anything for a laugh (fake sneezing and fake laughing are on the rise).

That wasn't too hard.  It's kind of fun to tell people about my kid :)

Then I moved on to some physical stuff, such as: 1. She moves too fast and doesn't pay attention to where her feet are, so she will fall, suddenly and hard. 2. If she starts to lose her balance (even in the slightest), her whole body will tense up and, again, she will fall.  If no one is in arm's length, she will reach for the closest child or object and possibly pull them down as well. 3. I talked about different PT techniques, goals, etc we've been working on and expressed my excitement to see what tips/techniques they will have.

Well, that wasn't as fun.  I would rather just tell them "Do you see her WALKING?!?!  Isn't it AMAZING?!?"   Instead, I'm trying to think about things they should know to prevent possible accidents . . . but that just forces me to imagine accidents.  And here I am again, pointing out the things that she can't do yet (stairs), and the things that make her different (suddenly locking up) . . . and that just makes me dwell (however briefly) on her can'ts and differences.  (sigh)

Then I try to explain her communication method, which is a combination of:

• signs (modified by her limited dexterity, these aren't ASL, but MSL---Maya Sign Language---Maya, Dave & I are the only ones fluent---although I understand more than Dave does, and sometimes even I am lost)
• sounds (so far on my list, "Mmm" means 8 different things---from more to cow, depending on the context)
• gestures (which are different from signs, such as pointing or waving arms)
• whines (which are, sadly, on the increase as frustration builds and she can't make herself heard).

And now I'm just agnst-ridden.  


The same fear that I've had, since she turned 2 and I started to imagine preschool.



Will they understand her?  


In my sad, dark place (where I don't sit for long) I have visions of her signing that she is thirsty, and no one understands-----or worse, they pull her hands down and tell her to stop (as her sign for water more or less looks like she's hitting herself in the face). 

It makes me tear up even to write that----my little girl begging for water in a foreign language and having the only-English-speaking adults saying "stop that".

And then I snap myself out of the drama and I'm glad that I'm writing this guide (and tomorrow I'm going to film a few video clips of the signs, make a MSL video dictionary so that the teacher will have a heads up).  They'll have a heads up.  And these are really good teachers at a  really good school, they've dealt with nonverbal preschoolers for a million years and this is probably old hat.   Really, I have to be glad that I won't be there to translate----the frustration of not being heard should prompt more concerted efforts on Maya's part to clearly communicate. 

But I worry for her.

I don't have a lot of "I wish I was just a mom of a typical kid" moments, but tonight . . .well, I had one of them.  I wish I wasn't writing a translation guide.  I wish she could say "I'm thirsty" . . . I wish she could walk around without the random seizing up and falling down.  I wish that my first-day-of-school jitters weren't compounded with the extra worries that come with our unique situation.

I'm not dwelling in it, because I'm also grateful---grateful that I get to write about her unique way of walking (because she's WALKING-and almost RUNNING) and grateful that I got to write about the sounds she makes (because she's trying) and the things she understands (like letters!  my smart girl). 

So I'm done for the day, and sleep will recalibrate my attitude.  Tomorrow: back at it.  And you know that Maya (the ham) will have a fabulous time making a video MSL dictionary.  :)

A summary of my worst thoughts this week

(Well, with a title like that, who wouldn't want to jump right into this one?)

I've spent a lot of time over the past week thinking about, talking about, emailing about and calling people about all-things-audiology/hearing-aid related.  It's overwhelming.  And I have some mixed emotions about the whole situation. 

My dual overriding feelings are those of excitement and anxiety.  I'm anxious about the extra testing we have coming up, and the process of molding and getting the hearing aids.  About getting her acclimated to them (I can't even keep mittens on this kid . . . I imagine the first few days will be a miserable repetition of "No, Maya, leave those in, please" times 1,000,000).  But I'm secretly really excited, too . . . as we've gotten some more data, it's clear that there are some letter sounds that she is probably totally unable to hear in a normal conversation.  I can't wait for her to hear more of what is going on around her, and to start possibly picking up on (and mimicking?!) those new sounds.

Next came the sadness.  Well, chronologically the sadness came before the excitment . . . but in terms of residual emotions, the sadness has been bumped to third.  It took a day or two to get on the "Ok, hearing aids!" train . . . and then somehow in my head the hearing aids were like the walker.  They would be something to use to help her out, until she could gain the necessary skills and "catch up" (by walking on her own, or by making sounds and talking on her own).  In my mind the hearing aids would be around for 3 or 4 years, she would be talking, and they would retire to a photograph and a blog entry about how "Someday I won't remember the reality of living with with hearing aids---I'll kind of remembering cleaning them and managing the batteries and laying them carefully out when she goes to sleep, but I won't really remember."

But while chatting with Amy (my super audiologist friend) I mentioned something about the long term plan, like "So how long does a kid with data similar to Maya's use hearing aids for?"  and she said "The easiest way to think about them is kind of like glasses----if your vision needs help, you wear glasses/contacts to make it better.   For children with hearing impairment, the hearing aids make the hearing better.  She may use them through all of her adult life."



(and I sat down and put my head on my desk)




Forever?





(that was another game changing moment for me)

So I started working at mentally re-moving into Acceptance (first it was acceptance of the she-will-wear-hearing-aids reality, and now, a few days later, this she-will-wear-hearing-aids-forever reality).  At the same time, I fought the Guilt again.  

I knew that guilt was waiting for me in the recovery room, and I had my apologies to Maya ready in my back pocket the night before.  But once I knew the hearing aids were coming, it hit again, and I thought, "You can't talk.  And in some part, your inability to communicate (which must be terribly frustrating) is due to the fact that you can't hear us clearly.   You've sent signs and signals and we should have pushed to do this sooner.  I'm sorry."

Oh, and wait . . .  let me get a jump start on the ones to come . . .

I'm sorry that we have a 3 hour audiology appointment on the horizon---tests and more tests and squirting strange goo into your ears that you won't understand is going to help in a few weeks.

I'm sorry that you will have to have something in your ear all-the-live-long-day to hear us better. 

I'm sorry that you will likely have to explain your hearing aids to friends, teachers, strangers.  Or that people may stare. 

I'm sorry that you'll get used to hearing us clearly, but then when we go to the pool (which you love) we'll have to take them off and you will hear muffled, garbly conversation again.

I'm double sorry for any extra time we spent waiting and double-checking your ears before putting tubes in.  Adding the fluid that you had there for 6 months on top of your hearing loss was adding insult to injury.  You already struggled to hear, and then you were underwater on top of that. 

-sigh-

And there's one more little nagging feeling----the fear.  The fear slice was small enough that as it started to rear up with its "what if"s I managed to push it back down.   But as the days passed by fear kept surfacing and I would tear up randomly and I thought to myself, Well I think I just have to sink into this, embrace the crazy and have a good cry and come out on the other side thinking "Well, if that's the worst, at least I've already looked it in the eye".  And so, yesterday after I put Maya down for her nap I let myself unravel.

Here's the thing . . . her ears have always been weird.  Her L ear was questionable at birth, and at a month old, and then declared normal (the first time that we had an ABR done, at 2.5 months old).  Then it was questionable, then probably normal, then not-quite-sure.  The right ear has been mostly normal all along.  And now this ABR shows mild & moderate (more on the data in a few days) loss.  So, while the mom part of me thinks "How frustrating that we could never clearly decipher this until now.  It's so aggravating that our prior tests were unclear, and that the first ABR may not have been done correctly.  But at least now we know exactly where her loss is" . . . the scientific part of me thinks "The 1st ABR said both ears were normal (2008).  Many of our previous tests have indicated that the R ear was normal, the L borderline (2009-2010).  The second ABR shows mild & moderate hearing loss (2011)."


So, what if it's progressive?




What if she's losing her hearing?




What if we are getting ever-so-slightly quieter and quieter? 


(and then the flood of irrational, panicked thoughts set in, and I rode the wave)

I don't want her to lose my voice.  To have whispers slip away, and the higher notes of the adorable songs that Dave is constantly making up drop out.  What if she can't hear the birds singing on our walks anymore . . . will she think that they just stopped singing? 

Will she get angry that we're getting quieter and think that it's something we're doing on purpose?   

I have a mental flash of her in this video laughing at the dogs, and I think about how she still laughs and laughs when dogs bark at the dog park.  I wonder, if she was to totally lose her hearing, how long would she remember sounds for?  How long before she couldn't recall a barking dog, or remember the melody of a song?

How long before she wouldn't remember what I sounded like when I shrieked "Maya!  Get back here!" and chased her giggling self, or whispered "I love you, Maya" in the middle of a big hug?


So, there were some tears.



And that was yesterday's small mental breakdown.  It was dramatic and self-indulgent, but cleansing.   The most effective way for me to get rid of a nagging, scary feeling is to totally let it in, sink into the worst of it, turn it around and look at it from every angle, and then step away and see that it's not as bad in the light as it seemed in the dark.

The reality of the situation is that progressive hearing loss in young kids is highly unlikely.  (On the flip side, it's not super common to have the mysterious undiagnosed genetic stuff that we have going on . . . so "rare" isn't as calming to me now as it would have been a few years ago.)  Maya's hearing loss is mild (like I said, more on the data details later) so she can probably hear us (and birds and dogs and all that jazz) pretty well---it's just not as clear as it should be. 

Truly, I am still worried about the possibility that her hearing loss is progressive.  But even if it were, and it was progressing to the point of really not hearing at all, I would guess that our enlightened technological age probably offers many crazy solutions (higher powered hearing aids, cochlear implants, etc) that would prevent her world from going silent.  (Which I know it's not.  It's just comforting to confront the absolutely highly unlikely worst case scenario and say "I think there's probably a solution for that, so it would be ok, regardless".)

Whew.

To tie this all up, I'm actually feeling pretty good now.  Excited to get this ball rolling, nervous about how much she'll cooperate for her upcoming testing/molding appointment, and super duper excited/curious to watch her hear things differently once she gets the hearing aids (which will likely be happening the last week in July.) 

:)