Out of the Mouths of Sassy Children...

As Miriam has the opportunity to try out new technologies, a clear but elemental truth is beginning to manifest.

I drive something like this:

She uses things like this:

So not fair.

Miriam has been using her communication device regularly for over a month now. To understand the significance of this, imagine your baby suddenly turned its head 360-degrees and said:

"Dang it mother, just change my butt already."

The device itself looks like an iPad, and acts as if designed by Microsoft: sleek and incredibly buggy. As a voice scrolls through various choices, Miriam uses her head to hit a switch and select the one she wants. It then speaks aloud in a younger girly voice.

I need.

She hits the switch and it goes to a submenu. It scrolls through a few choices until it reaches the one she wants.

Help.

More scrolling. Click.

Something hurts.

Click.

My body.

We ask a simple question, such as "So does your body hurt?" and wait for a response. If the phrase was intentional, she will smile as confirmation, and then we obey as best we can regardless if she meant to hit it or not. In this way she is learning a new language through our responses: using vocabulary and syntax to communicate. It takes time.

She hits a lot of phrases that make no sense. She finds patterns. She gets tired and the voice keeps droning on. Yet two things have emerged in these early stages:

First, it is interesting to see her use phrases that communicate, even if they are not exact. For example, by the expression on her face and the stiff tone of her body, she was clearly in distress. If she's in her wheelchair for too long, she can get sore and stiff - and then comes the high-pitched squeals until we put her back in her bed.

"What's wrong?" I asked. "You have to tell me."

Pause. Device scrolls.

I'm mad.

"Why are you mad?"

I'm sad.

I'm scared.

I need onlee zpeak wan languaage, mon cherie.
L'lanwage d'love.

It was clear that, whatever she actually felt, it was negative, and that meant she needed help.

Ages ago I learned to speak French, serving as a missionary for The Church of Jesus Christ of Latter-day Saints. Arriving in Lausanne, Switzerland, I desperately wanted to be understood. It didn't help that the typical French-speaking citizen looked at me with an expression akin to stepping into dog poop.

Still, I tried: Me! Hungry! Bread!

So I've been there. She's learning to speak, and we're learning to listen.

The second surprise in these early stages is that she has immediately picked up a few phrases, mostly connected to an immediate need.

Something hurts. 

I want my bed. 

Sanitation Alert - Hazmat Level 5.

(The last was added by me. It's a lot cooler than Dang it mother, just change my butt already.)

Every so often, however, she has shown the ability to go beyond communicating basic needs. Once, when Mom told her she would help in a few minutes, Miriam's response was a little sassy.

You've got to be kidding me.

When brother came by, she decided to add:

I am a princess, kneel before me.

These are the moments that make life worth living.

A couple of weeks ago, I was playing a video game. She watched next to me as the device dutifully scrolled through choices. I was onboard an alien spaceship, taking down alien monsters with a laser pistol.

That's weird.

"I know, right?" I replied, as if she's always spoken to me. "It is pretty strange."

Can I have a turn?

That made me laugh. "I wish, Missy Magoo. I wish you could." I stopped the game, turned off the TV, and started to leave. "I have to go pick up your brother. Mom will come get you in just a second." I leave. From the front room echoed a little girl's electronic voice:

Turn on the TV.

Great. I have a little girl already addicted to the boob tube.


***


ADDENDUM: 

The other night, we had this exchange:

I need. Help. Something hurts. My body.

"Yes, my dear. Can you please wait just a moment?"

I feel. Sad.

"I know sweetheart, but you're going to have to wait."

No.

"Hey," I reply. "Don't get sassy with me, missy."

Who would have thought I would feel so happy with a child who talks back to me?

If It's Not Worth Losing, Is It Still Lost?

Thinking about Tinkerbell in my last post got me thinking.

Well, thinking more.

My thoughts have lately turned to loss. I was feeling sad about all the things Miriam will miss. She will never dive to the bottom of the deep end to get a penny. Never dance at the Prom. She'll never marry or have children or get a job. She will never enjoy a roller coaster or taste cotton candy, or eat so much pizza and Coke that she burps in front of her giggling friends during a sleepover, and they all laugh and hit each other with pillows.

There are a lot of things I'm glad she will miss. Having to wait in line at the DMV. Having to endure a job interview, get fired, or dumped by her boyfriend. Hopefully, in the cold reality of her life, she will suffer less from disillusionment.

Part of the Human Condition is, in my opinion, a sense of invulnerability. We think we are special, that we are destined for greatness, that all the social conditioning provided by Disney© and Friends ("Just Believe and All Your Dreams Will Come True!") is real.

Sadly, we are a good deal more mediocre than we realize. Many of our dreams fade away, and we soon realize we are mortal and breakable and ordinary. Those things that seemed So Important ten years ago seem but trifles compared to the crap we're dealing with now.

Sometimes those "things we miss" aren't that great. Sometimes that makes losing them a little easier. 




And Now, A Case in Point:

One (of many) depressing facts about growing up is seeing childhood memories with adult eyes. You go back to Disneyland, for example, and realize the castle is much smaller than you remember. 

I reread Peter Pan recently and now understand that Captain Hook was a hero - and Peter Pan was a brat. He's a punk who lures children from their beds, teaches them to dress up like animals and kill Native Americans.



Admit it, boy. You're a racist, murdering furry.

If you think about it, most fairy tales are populated by disobedient and selfish children. As I considered those childhood fantasies, I now saw things very differently.

When you look at things this way, I wonder if maybe my daughter wasn't missing as much as I thought.

Snow White?

Decisions, decisions.



Floozy. Flaunted her looks. Ran off to live in sin with seven short, old men whose sole goal in life was to satisfy their greed. 


Cinderella?

Vanity is its own reward, you thoughtless girl.

Ungrateful. "Oh…work is so tough! I actually have to EARN my living doing a job the servants used to do. Couldn’t be bothered to return my borrowed dress and carriage on time, much less bring the whole costume back in ONE PIECE!" 


Sleeping Beauty? 

"Stop, Princess! What are you doing?"
"Thinking only of myself, naturally."

Self-Absorbed. Warned not to touch the spindle. Did it anyway.

That palace guard she never noticed? Just before Maleficent put everyone to sleep, his wife left to go shopping. A hundred years later he awakes, still young, and finds the mummy of his bride lying in the bed next to him. All thanks to Miss What-Color-Is-My-Dress.

Pocahontas?

Too much boob, not enough nose.

Conceited. Idol of Second-Grade girls, though if she dressed like this in their school she'd be asked to wear a coat.

Mulan? 

It's complicated.

Confused. Gender hatred leads to the mass murder of Mongols.


Ariel?

One day, I hope to shame my family.

Addled by Lust. Underage bride who scorned her heritage, openly disobedient to father and caregiver despite ample warnings.

Jasmine? 

What do liberated young women do?
Get half-naked to appeal to boys, duh!

Diva. If she dressed like this at her church, the neighbors would certainly talk and the pastor would certainly share a message on modesty at the next service.

Winnie the Pooh?

Imbalanced. Armed. You do the math.

Psychotic. He goes to his secret place and hits his head to make it work. He hallucinates. He dresses up like weather to indulge his addiction.

And don’t get me started on Eeyore.

I’d be patient enough if he was just a misanthrope, like Lord Byron or Kurt Kobain, hopped up on misery as his source for creativity. I’d let his attitude slide if he produced a decent painting or poem or grunge ballad.

Instead, the suicidal donkey is given the assignment to find that blowhard Owl a new house. And where does he get it?

STEALING from the most innocent, tender-hearted creature in the whole forest. 

PIGLET!

What does Piglet get? Market value? No.

A PARTY! 

We've stolen your ancestral home.
Have some cake!

Does the brainless bear speak up for him? NO. He invites poor Piglet to shack up with him. That’s right. Lose your home and live in sin with a hallucinating bear. Piglet will never say anything. He’ll take and take and take until the fateful day when a shot rings out in the forest, and Owl is found talons-over-feathers in a shallow grave. 

“But he was so nice,” they’ll say, “He was so quiet and kept to himself.”

No. Piglet was a boiling cauldron of shame.

Ah. I feel better now. Childhood delights ruined by the cold reality of adulthood? Loss loses its sting a little bit, doesn't it?

The Tinkerbell Syndrome

AND NOW, A PUBLIC SERVICE ANNOUNCEMENT:

Behold, my daughter's avatar:

Coy. Cute. Deadly.

When Miriam is around, you're going to see Tinkerbell. Tink is emblazoned on her wall, backpacks, clothing, wheelchair van, and just about any other thing that is associated with her. 

We are picky, because THIS is the Tink we revere:

Plenty of attitude, despite partial nudity.

…and NOT this:

Behold, the face of evil.

We do not consider the Fairies-brand of 3D-talking-tink as canon. We consider her and her demonic BFFs as abominations. Tinkerbell does not talk. She does not have girl problems, does not hang with nerd-fairies, does not sing and wax poetic about how she wished she fit in as if she ever went to middle school.

No. Tinkerbell is a one-way thinker. She is either giving her heart and soul to save you from a bomb, or she is plotting to kill you because you dared look at her boyfriend the wrong way.

That's more like it.

Why, you ask?

To understand this, let's take a little tangent. A long time ago, a therapist gave an analogy of how our minds work. We are constantly processing our world much like a mighty freeway, with constantly shifting information, ideas and feelings.

This is your brain. Most days it's rush hour.

A child with cerebral palsy, however, is often dominated by their world - and can sometimes be limited in their cognitive skills - so that it seems like they have room for one thought or emotion at a time. He likened such a child's brain to a two-lane winding road.

Miriam's brain. Serene, and slightly dangerous.

This seemed to match her behavior since birth. It did not take much to change her mood. If she was upset, a little distraction switched her to a happy place. Her happiness could also end in a heartbeat, especially if she was bored or uncomfortable. Her focus would target one thing at a time.

In other words, one minute she would be THIS:

She has such a glow about her.

…and then she could turn into THIS.

What the shizzle did you just say?

As she has grown older, this two-lane-winding-road has grown more complex and subtle, as she has more experience and more confidence in her ability to share her feelings. If she's ticked off today, no amount of petty distraction will lure her from an arse-whuppin'. She gonna let you know. Alternately, she is more than happy to share her love and excitement to more people, to let them feel that she enjoys their company.

But this goes back to the original question: Why Tinkerbell? 

Soon after this analogy was presented to us, we discovered this quote from Barrie's original novel Peter Pan, on the reason why Tinkerbell had the audacity to try and kill Wendy-bird:

"Tink was not all bad: or, rather, she was all bad just now, but, on the other hand, sometimes she was all good. Fairies have to be one thing or the other, because being so small they unfortunately have room for one feeling only at a time."

Sharla and I looked at each other, and it was official. Tinkerbell is Miriam's avatar. She represents a woman with passion, with sass, with a strong spirit - someone who can make you fly and pull your hair out at the same time.

There you go.

Yep. There she is.

Soon after hip surgery. How many Tinks can you find?

UPDATE:
By the way, if you doubt my conviction on this issue, understand that I have Tinkerbell's personal approval.

___

ADDENDUM: 
I was informed recently that Tink's official name is actually Tinker Bell. Here is my official response:

"PPPPPbbbbbttttttt!"

Help! I'm Trapped in Here!

Let's set the record straight, shall we?

My daughter Miriam is a goofball.

So am I.

No surprises there.

As a consequence - and because we have a child with such overbearing issues - we have adapted into goofy hermits. We have turned inward, when we would have been more socially involved. 

It's a life both chosen and given to you without your permission. People don't associate with us like they used to. We're also less inclined to go anywhere, because it's a real pain to get everything on and belted and rolled in and snapped closed and filled up to go somewhere...only to face little-to-no parking, too-narrow places or inaccessible buildings, equipment malfunctions, emotional meltdowns, and the constant, constant, constant non-verbal cues by strangers. 

People love to stare. That's understandable, because their brains have to process, but invariably these same people make quick judgements.

That poor girl. She's in a wheelchair. She must be retarded.

My response to that last word is better summed up here.

Look, I get it. This is an instantaneous behavior, ingrained in our need to interpret the world. It's something we all do but (hopefully) adjust as we get more information. 

At the same time, we have a deep-seeded need to be understood immediately; we don't like people to misjudge, mislabel or otherwise make assumptions about us.

I prefer "Angel Drawers" myself.

It is easy to treat children with cerebral palsy as very young children because, well, they act like it. They drool. They use sounds instead of words. They use involuntary physical motions more common in babies. They tend to smile a lot. Emotions swing wildly. They are amused by most everything. 

Do you exist? Then you'll make me smile.

Many people think of these kids as intellectually inferior because they do not exhibit the same outward signs as your typical Harvard graduate. 

(To be fair, however, put a couple of tequilas in that same Harvard graduate and watch how they behave.)

It is hard to tell Miriam's intellectual age, because she speaks a language dictated by her disability. If she cannot use traditional verbal and non-verbal means to communicate, she is forced to use what she has. If "what she has" means using physical skills that are more infantile, it's because that's the part of the brain she can access. 

It is easy to assume she, and others like her, is more like a "baby." Therefore, we find ourselves treating her like one.

Yet the recent addition to a new Communication Device (aka Voice of the Borg Queen) is revealing there may be someone very different trapped inside that lil'bitty head of hers. And not so different. We are beginning to hear things we always felt about her, but she could not express.

An early test of the "Voice of the Borg Queen."

We may have a very polite girl.

Are we reading into things? Are we taking our desperate hopes and misinterpreting coincidence into reality? 

Only time will tell.


ADDENDUM: 
A friend shared this link with me. Very different issue on the outside, though very much the whole point of this post. Again, only time will tell.

Reaching My Autistic Son Through Disney

Three Reasons Why I Am Going to Hell

1. I encourage her to watch gory, brutal violence. 

This happens to be her favorite.

2. I videotape her when she expresses emotions.

We can't help it. It's so darn cute.

3. I serve as mouthpiece for her princess voice.

I know. This last one will drop me right into the Ninth Circle of Hell.
But dang it, it's funny, and she seems to be on the joke.

A Rosy by Any Other Name...

Parents with a child with cerebral palsy live with the tedium of repetitive labor and the subtle terror of expecting something bad to happen that day.

Yet there's a sliver lining in all this, right?

When in doubt, take funny pictures of your children.

They say that people grow to love those whom they serve - which is very, very, true. They say you grow to adore those family members, especially a child, who are so vulnerable (see my previous post). They also say that we develop coping mechanisms to manage the less, shall we say, attractive portions of this job. 

(BTW, I'm not exactly sure who "they" are, but "they" say a lot of things, don't "they"?)

Here's the official definition from our friends at Dictionary.com:

cope

[kohp]
verb (used without object), coped, cop·ing.

1.

to struggle or deal, especially on fairly even terms or with some degree of success (usually followed by with ): I will try to cope with his rudeness.

2.

to face and deal with responsibilities, problems, or difficulties, especially successfully or in a calm or adequate manner: After his breakdown he couldn't cope any longer.

If you go to the site and type in the code ALT / CONTROL / BS, the site resets to reveal the actual definition. Try this some time and see what happens.

cope

[kohp]

verb (used without object), coped, cop·ing.

1.

to struggle or deal, especially on fairly uneven terms or with some degree of feigned success when, in actuality, you are manifesting the stress in some other way such as alcoholism, weight gain, excessive denial, excessive distraction, random acts of emotional outbursts, blaming of close associates and/or one's particular deity, deep selfishness with the justification of hella yeah I deserve this and/or so-called "coping mechanisms" which are known to be simply less obvious forms of denial.  (usually followed with): I will try to cope with his rudeness but, when no one is looking, I will so Bruce Lee all over him.

2. to face and deal with responsibilities, problems, or difficulties, especially successfully or in a calm or adequate manner in front of others, except when posting on Facebook: After his breakdown he couldn't cope any longer, so he ordered a pizza and played video games all night. 

Behold! 'Tis Foameo and Drooliet!

One of the ways our family "copes" with challenges is humor. No surprise there. A big part is the use of funny names. I know "they" prefer that we use "correct" terms for things, but "they" need to relax a little and allow people to have a little fun.

(A good example is using the word penis instead of weewee, but we prefer the more colloquial term jinglybells. The last one makes us laugh.) 

Having a child with cerebral palsy means that every solid, liquid, gas, shape, smell, texture, taste, sound and horrific sight will be coming your way, so some of us have to do something to manage the input.

See? We're coping!

Sign the Confession! SIGN IT!

Excerpt, The Tavares Family's Official Codebook of Absurd Replacements:

***

Tinkles: Number 1

Rosy (per my mother, "Ladies do not stink. A lady's bathroom smells like roses."): Number 2

Grand Rosy Explosion and/or Natural Disaster and/or Hazmat Level Five: Don't ask.

Sanitation Device: Diaper

Power Gloves: Hand orthotics

Super Sandals: Feet orthotics

Swat Vest: Torso SPIO vest for trunk control

Power Puffs: Inhaler

Twitchy Mctwitches: Seizures

On The Air: Her cochlear implant is active

Miriam's Mercedes: Wheelchair

Grins and Giggles: Body cream after a bath

"God Bless Us, Every One": Give Miriam something that's actually meant for Dad, like an extra slice of cake.

***

See? It's much more interesting!