triage

 

My friend, Scott called me yesterday.  Whoa! Don’t just keep reading.  Click on Scott’s name and read the story. Please. Pretty please. This is important, folks. This MATTERS. You click. Read the whole article. I’ll wait.

“I need help, Jess.”

Sometimes, life is a game of triage.    

What matters most? What needs my attention most urgently? Who might literally die if I don’t take five minutes to get educated and HELP.

We fight for a better life for our children.

Scott and Katy are fighting for their child’s life.

We fight for awareness. We walk and hand out buttons and magnets and scream from the rooftops and we watch hours and hours of footage about autism. 1 in 144.

How many people do you know who know what SMA stands for? Yet it KILLS MORE BABIES THAN ANY OTHER GENETIC DISEASE.

We have big names. Bob and Suzanne Wright – love em or hate em, they know people. They know a LOT of people. With money. A LOT of money. And Influence. Yup, a LOT of influence. Jenny McCarthy – love her or hate her, she is VISIBLE. She’s on the cover of magazines. Mike Savage (I’m not giving you the choice on this one and I sure as hell ain’t linking you to him) – hate him, he talked about autism because autism is VISIBLE.

SMA isn’t sexy. It’s heartbreaking. It’s the stuff your worst nightmares are made of. It’s the stuff that no one wants to talk about because we can’t bear the pain of it. But Scott and Katy and so many parents like them live that pain every day.

We HAVE TO HELP. Children cannot die on our watch when they don’t have to. No one should have to live this way.

We are hurting.

They are dying.

Triage.

SMA  has been chosen by the National Institute of Health to be a model for translational research because it is the closest to a treatment or cure out of 300 neurological disorders. Think about that. We are this close. This flippin close.

We are all connected. SMA genetic research in the “Genomic Modulation of Inherited Genetic Diseases” project may provide novel insights into potential ways to treat SMA and 40 plus similar diseases:

• Tay-Sachs Sandhoff
• Parkinsons
• Alzheimers
• Friedreich’s Ataxia
• Spinocerebellar Ataxia Type 1
• Spinocerebellar Ataxia Type 2/Episodic Ataxia Type 2
• Spinocerebellar Ataxia Type 6/Spinocerebellar Ataxia Type 7
• Deafness/Dystonia
• Myotonic Dystrophy
• Duchenne Muscular Dystrophy
• Late Infantile Metachromatic Leukodystrophy
• Late Infantile Neuronal Ceroid Lipofuscinosis
• X-Linked Adreno-Leukodystrophy
• Menkes
• Types A and B Niemann-Pick Disease
• Fragile X
• Machado-Joseph
• GM2A
• Gaucher Disease
• Sialidosis and Galactosialidosis
• Infantile and Late-Onset forms of Neuronal Ceroid Lipofuscinosis
• Classic Late Infantile Neuronal Ceroid Lipofuscinosis

You see Fragile X in there, right? I knew you wouldn’t miss that.

They need money. $1.3 million to be exact. They need to help fund incredibly promising gene therapy research.

If beautiful, delightful Billy were your child, you’d have called me too. You’d have called anyone and everyone you know who might be able to HELP.  Please, pass this on to anyone who will read it.

It takes a village, friends. And the village that I want to be a part of, no the village that I KNOW I AM A PART OF, fights for its children. All of them.

HELP

the kandinsky is painted on two sides

“Oh, this is a Kandinsky!” 

“A double – one painted on either side.”                  

“May I see?”                  

“Yes, of course.”                  

“Extraordinary.”

“What makes it exceptional is that Kandinsky painted on either side of the canvas in two radically different styles. One wild and vivid, the other somber and geometric.”  

“My God!”                   

“We flip it around for variety.”                    

“Chaos, control. Chaos, control.” 

“You like? You like?”

~The Kittredges showing their prized painting to Paul in Six Degrees of Separation

 

Here’s the thing about a blog. I bring you these little slices of our world. I try to make them pretty or at the very least entertaining or provocative so that they might keep your interest. Of course I only write what I want you to see. Sometimes I think the rest of it is extraneous. Sometimes I think it’s too emotional. Sometimes I think it’s too personal. But the point is that, by definition, you’re only seeing the part of the picture that I show you. And you, as a dutiful member of the Us Weekly generation (oh, admit it!), you happily go along for the ride. Just like you pretend that the photos of Angelina Jolie are always that closely zoomed in just so that you can see each hair on the heads of her beautiful, multinational brood and certainly not because they are cropping out the multitude of nannies and bodyguards in the background. Heavens no!

 

But just like the photo of Angelina, the smiles sometimes fade once the flashbulbs are gone.

 

I spent last night feeling sorry for myself. Feeling like a fraud. I’d given you – given myself – the gift of this very one-dimensional picture of Kendall yesterday. It was a delightful picture of Kendall conquering the world. Kendall scoffing at the labels, beating back the doubters, bursting through any and all limitations. In four sentences I showed you her beaming, balls-to-the-wall Mama who wouldn’t, couldn’t be discouraged. It was a pretty picture. It was downright inspirational. It was heady stuff. And I was flying high off of it, not to mention your praise and encouragement. How I adore you!

 

The higher we fly, the harder we fall.

 

I came home ready to see that take no prisoners kid. The one who wouldn’t be defined by this thing that we wrestle with daily. The kid who could beat anything.

 

Turned out that kid was on hiatus. Pooped I guess after a long and stimulating day. Climbing mountains and slaying one’s demons can take a lot out of a kid.

 

I came home and I was forced to confront the rest of the picture. I wasn’t ready for it. I didn’t handle it well. I got frustrated when I couldn’t find a way to break her out of her loop of perseveration while she sat moving one sticker at a time from its package to a sheet of paper.

 

“They are going to bed. They are wearing their pajamas.”

 

“Are they tired, Kendall?”

 

“They are going to bed. They are wearing their pajamas.”

 

“Are they sleepy? Did they have a long day?”

 

“They are going to bed. They are wearing their pajamas.”

 

“Is someone going to sing them a lullaby? Who is going to tuck them in?”

 

“They are going to bed. They are wearing their pajamas.”

 

And on it went.

 

I couldn’t get us out of the Carousel of Confusion, so I sulked and walked over to Matt in the kitchen. The timer on the oven beeped its notice that it was done.

 

It broke my heart and opened the floodgates when I looked over at the table to see Kendall hunched over, rocking, hands clamped tightly over her ears saying, “No noises. No noises.” Over and over and over again.

 

I fought back tears but I lost.

 

Darby had a friend over for a play date. They came down to say hi. As soon as Darby’s friend came over to her, Kendall squealed with delight and YELLED, “A, do you want to do the Mambo?” And then in what sounded like a VERY loud impression of a Spanish speaking dolphin she YELPED “Aye Yay Yay Yay Yay.”

 

A stood there looking stunned and confused. Increasingly so as Kendall repeated this overture the second, third, fourth and fifth times. She finally walked away.

 

A stayed with us for dinner. We went around the table asking each child to tell us about their favorite part of the day. A talked about making a picture book at her camp, Darby told us how the music teacher at her camp (whom she adores) told them a story about a giant dragon, larger than our house (and the supermarket too .. big as the MALL!) who befriended a boy named Jackie and then .. “Do you see where this is going, Mama? It turned out to be Puff! Puff the Magic Dragon and Jackie was Jackie Paper like in the song!” I asked Kendall what she did at school. She said, “I liked playing with you.” (I wasn’t there.)

 

She needed breaks during dinner. She asked three times to go upstairs. We walked around the house (office, dining room, back to the kitchen) to give her the minute to clear her head that she obviously needed.

 

And I watched it all through the lens of our guest. What does this look like? The squealing, the phrases repeated ad nauseum, the covered ears, the LOUD requests to Mambo? Did I mention the pretend Oreo that Kendall was trying to shove into A’s mouth for a good three minutes?

 

It hit me like a ton of bricks. My daughter has autism. And even the fabulous days and the incredible victories and the kick @ss top of the world moments don’t take that away. They eat away at its import, no doubt. But they don’t take it away.

 

I most often see Kendall in the bubble of our family and friends. When I see her interact with peers it’s often facilitated. Even when it’s not, the peers that she’s interacting with are neighbors who get it or they are the kids from her school. Her glorious, safe, aware, integrated school where half the kids have some kind of special needs of their own and the other half are so used to everyone having those special needs that they don’t know the difference anymore. (Note the subtle plug for inclusion.) They get it. The people who I see her with get it. They know very well that Kendall might ask them to Mambo, that the stickers are all going to bed and that squealing is a happy sound.

 

But it’s very different when the world gets bigger and the people in it don’t know that they may need to adjust their expectations.

 

Kendall starts kindergarten in five weeks. She will attend our neighborhood elementary school with a full time behavioral aide. But her world will be much, much bigger. What will happen when she starts nicknaming the kids? What will happen when she runs around the playground squealing? What will happen when she asks them over and over (and over) again “Are you a boy or a girl?”

 

What happens when the boy down the street is too cool to say hello to the weird little girl who runs around asking everyone his or her name?

 

I worry for my baby. I worry when I am forced to see her through the lens of that bigger world. I worry that I can’t educate everyone. I worry that I can’t teach them to be understanding and patient. And I can’t. So I need your help. Please, teach your children. I implore you. Talk to them. Tell them that not everyone is like them. Teach them that it’s never ok to tease or ignore or exclude the kids that are different. Kids don’t get this stuff intuitively. It’s up to us.

 

I can’t do it alone. I’m not good at admitting that. That there’s something – heaven forbid – OUT OF MY CONTROL. But this is desperately out of my control.

 

So, I spent the evening feeling like a fraud. I felt like I sent you a close up photo of a soldier rescuing a puppy in the middle of a war. It’s real and it’s wonderful, heartwarming and inspiring, but when you widen out the lens, you see the pain and the destruction in the scene.

 

I still see the soldier, but sometimes the war creeps into view.

top of the world, ma

 

 

“Ain’t no stopping us now. We’re on the move.”   ~McFadden and Whitehead

 

“Coordination disorder”

“Motor planning difficulties”

“Generalized anxiety”

“Kendall at the top of a climbing wall at My Gym“

 

I’ll take door number four, Monty.

 

Hear me now, folks. Come a little closer. I don’t want you to miss this.

 

 

There is nothing my child can’t do if she decides that she wants to. Nothing.

you’re gonna miss this

“Before she knows it she’s a brand new bride
In her one bedroom apartment
And her daddy stops by
He tells her it’s a nice place
She says, ‘It’ll do for now’
Starts talkin’ about babies, and buyin a house
Daddy shakes his head
And says baby just slow down    

Cuz’ you’re gonna’ miss this
You’re gonna’ want this back
You’re gonna’ wish these days
Hadn’t gone by so fast
These are some good times
So take a good look around
You may not know it now
But you’re gonna’ miss this

Five years later there’s a plumber
Workin’ on the water heater
Dog’s barkin’, phone’s ringin’
One kid’s cryin’ one kid’s screamin’
And she keeps apologizin’
But he says they don’t bother me
I’ve got two babies of my own

One’s thirty- six, one’s twenty- three
Heh, it’s hard to believe
But you’re gonna’ miss this”

              ~Trace Adkins

Trace Adkins, with that deep, strong, get right into your soul and light a fire voice was singing that song to me last night. He may not have known he was singing just to me, but he was. I thought, Oh, Trace. I hear you, buddy.

Time flies by in a blur.

I think about it every day.

I think about it when I see the subtle (and not so subtle) changes that make my babies look less and less like babies.

I think about it when I sit with my dad watching my girls run in the yard.

I think about it when he turns to me with tear filled eyes and says, “That was you, Jessie. FIVE MINUTES AGO. I swear it was five minutes ago.” And his voice trails off.

I think about it when I fold the outgrown clothes that hold so many memories into boxes, too small to fit their ever changing little bodies.

I think about it when we give away the last vestiges of babyhood – when we pass on the strollers and the changing tables and the bouncy swings that furnished our lives for such a short time.

I think about it when Darby tries on new expressions “Oh, my bad, Mama” to see how they fit.

I think about it when I hear my 88 year old grandmother call her 68 year old son, my father, her little boy.

I think about it when Darby asks me to hop on the plastic toboggan in her room before bed. “We’re going to Italy, Mama. We’ll have that funny coffee and those yummy pastries you told me about.”

I beat myself up thinking about it after I tell her I just don’t have the energy tonight.

I think about it when Kendall wraps her tiny little fingers around mine while we walk, even when every attempt I make at conversation fails.

I think about it at the end of every school year. And at the beginning of the next.

I think about it when I feel like I can’t take any more time away from work. And I think about it when I take it anyway.

I think about it when we plan a vacation that we can ill afford (not to take).

I think about it when Darby asks me over and over and over again when she can next come with me to my office.

I think about it when I hear about children who struggle for their very lives and I remember yet again how blessed I am.

I think about it when I read the newspaper – when I see horrifying stories from Iraq and Darfur and and and.

I think about it when my girls say grace. “Thank you for the food we are about to receive and the precious gift of each other.” Amen.

I think about it when I hear them laugh. The hearty care free laugh that replenishes my soul.

I think about it when I see them dance without the inhibition and self consciousness that comes with age.

I think about it when they sing. Those tiny voices perfectly in tune. Or not.

And just when I think I get it, that I really get it –  I turn on my computer and navigate my way through my glorious village of Mama Bloggers. I wander here and there, exploring the tapestry of my little corner of cyberspace. Like a dutiful tourist I pick up souvenirs from my trip - insight and knowledge and hope.

And the occasional b!tch slap.

The loving, generous, velvet gloved wake up call kind of b!tch slap that you would think could only come from someone really close to you. Someone who knows you so intimately that they can crawl right into your experience and tell you exactly what you need to hear.

But it comes from someone you’ve never met. Someone who, like a big sister, says, “Trust me. I’m farther along on this journey than you are. I know. Listen to me.”

And you do listen. You listen because her voice is clear and true and honest and her message is so urgent and pleading and you know you need to hear it NOW.

And you inhale her words and you take them to heart. Because she’s right. She is ever so completely, truly right.

You’re gonna’ miss this
You’re gonna’ want this back
You’re gonna’ wish these days
Hadn’t gone by so fast
These are some good times
So take a good look around
You may not know it now
But you’re gonna’ miss this

why? because!

Kendall and I were playing with her Dora the Explorer Colorforms the other night. She put a Colorform glass of water on top of the Colorform Benny the Bull. Ooh! The perfect naturalistic opportunity to give a shot at the “WHY/ BECAUSE” that we’ve been working so hard to cultivate.

Oh, by the way, pardon the interruption, but I wanted to let you know – this is life at home with autism. We are all (parents, siblings, babysitters) amateur floortime practitioners, behavior analysts, speech therapists, neurologists, psychologists, OTs, PT’s. Name it; we do it.

I watched a movie not long ago called Including Samuel. If you haven’t seen it, do. It’s a wonderful story of one family’s efforts to include their disabled son in their daily lives.  It is human and real. It does a fabulous job of reminding us why educational and social inclusion are so important if we expect to live in a world that respects and values the full spectrum (pun not intended but awfully convenient) of the human experience. In the movie, Samuel’s mother, Betsy Habib says that at one point she spent nearly all her time with Samuel working on his various therapies. She began to feel like she was essentially just another one of his therapists. ”I just want to be his mom,” she said.

It can be a tough balance for any parent. We all have to find time to teach and mold and guide our children while also trying to just be their moms and dads. But autism never takes a break. Generalizing skills does not come naturally to our kids. If we don’t reinforce what they’re learning at school or speech therapy or OT or ABA, it’s not going to make it out of the setting in which it’s taught. So I hear ya, Mrs Habib, but so far the ‘just mom’ moments are pretty hard won.

So, back to the latest and greatest.  We’ve been working on cultivating “WHY” and “BECAUSE”. If it were a college class it would be called “Advanced W Questions”  * * please be sure to have completed prerequisites: What, Who and Where 101 * *

A year and a half ago, Kendall still had not used a W question. She just didn’t have them in her arsenal. I was armed and ready for the barrage of typical three and a half year old questions. Why is the sky blue? What are you doing? Where are we going? Are we there yet? Who is that lady? Why is she sitting like that? What’s your favorite color?

The questions never came.

So we went after them. We found the people who knew how to teach Kendall to use them. Christine and company, Jennifer, Marcia. The Oracles of Greater Boston. They introduced her to the power of What, Where and Who.

We reinforced them at home. We pushed and we prodded and we celebrated small victories. And they came. Oh, they came. Kendall can ask us about her world. What are you eating? What are you doing? Where do you live? Who are you talking to? What’s your name?

She got so good at using them that we decided it was time to tackle “WHY.”

So we went back to the well. Our kick-ass ABA team dug deep into their bag of tricks and came out with (drum roll please …) Kendall’s Book of Why. Here’s how it works. We took photos of Miss Darby (always an eager model) in various situations around the house. We have one of her opening the refrigerator door, one of her washing her hands, one of her lying in bed. Under each one is a question. WHY is Darby opening the door? WHY is she washing her hands? WHY is she lying in bed?

We read it every day. We started by modeling the answers. BECAUSE she is hungry. BECAUSE her hands are dirty. BECAUSE she is sleepy. Kendall quickly memorized the book and began to recite it by rote.

And then one day last week we were playing with the Colorforms and I asked the question.

“Kendall, WHY is Benny the bull drinking water?”

“BECAUSE he’s thirsty.”

“Oh My Gosh! Oh My Gosh! Oh My Gosh!” (I can’t say Holy Sh!t at home)

“KENDALL YOU DID IT!!!”

Darby came running in to see what all the fuss was about. I told her to ask her sister.

“Kendall, WHY is Mommy so proud of you?”

“BECAUSE Benny drinked-ed the water.”

That’s two! (Two for two if we start counting right now.)

So WHY?

WHY do we keep plugging away? WHY do we keep searching for more keys to unlock the world for Kendall?

BECAUSE Benny the bull drinked-ed water. Oh, and BECAUSE there’s not a darn thing that my little punk can’t do with the right tools.

can you hear me now? is this thing on?

 

 

“I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean they scream and they’re silent? They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’”

- Michael Savage, radio host

 

Angry?

Me too.

 

So what do we do?

Do we sit and wallow in it?

Sure. Sounds like a good plan.

I’ll give you a minute.

Wallow away.

 

Done now?

Good.

 

Now it’s time to do something.

What do we do?

Glad you asked.

 

We talk.

 

We talk to anyone who will listen.

We educate the world about our children.

We get on our soapbox and we talk.

We scream if we have to.

We find a way to be heard.

 

Someone said to me not long ago that she kept her child’s diagnosis hidden to protect him from ignorance. With all due respect to her, I choose to protect my child by battling the ignorance head on. It’s the only fight I think I can win. Besides, I’m too loud to hide.

 

So what do we tell the world? What do we tell the Michael Savages who would belittle and berate and taunt our children?

 

We tell them what we live.

 

We tell them what it’s like to see the world in too bright Technicolor. We tell them to think back to a time when they just got out of the ocean and their eyes were full of salt and they looked directly into the sun. We tell them that’s what it can be like to walk into a classroom.

 

We tell them what it’s like to hear the world in too loud, too chaotic Dolby digital sound with no volume control. We ask if they’ve ever had a migraine. When they did, did they ever turn on their stereo and their television, both on full blast and then have three people shout at them from different directions? We tell them that’s what it can be like to walk into a restaurant.

 

We tell them what it’s like to sit in the middle of a roomful of people talking and to not be able to understand a single word they are saying. We tell them to imagine what it would feel like to be a native English speaker who has a rudimentary knowledge of Spanish trying to follow an argument in heavily accented Castilian. We tell them that’s what it can feel like to be at a birthday party.

 

We tell them what it’s like to be completely overwhelmed by everything around them – to feel like they’re standing in the middle of the track at the Indy 500 and the cars are coming at them at full speed. We tell them they too might lose their facility to calmly ask for help when they have no idea what’s happening next. We tell them they’d likely panic and scream and curl into a ball. We tell them that’s what it can feel like on a soccer field.

 

We tell them what it’s like to taste and smell the world so vividly that they can’t tolerate it.  We remind them what it feels like when they have the flu and every smell sets off their salivary glands and their gag reflex. We ask them, what if, when they feel like that, someone hands them a pot of curried meat? We tell them that’s what it can be like to sit down for a meal.

 

We tell them what it’s like to lack the language to express your most basic needs.

 

We tell them what it’s like to be so sensitive to certain sounds that you live in fear of car alarms, sirens, coffee grinders, garbage disposals, horns and any of the places that you may have heard any of those sounds before.

 

We tell them what it’s like to try desperately to interact with your peers, only to be rebuffed time and again because you can’t manage the most rudimentary conversation.

 

We tell them what it’s like to be so oversensitive to touch that a hug can be torture.

 

We tell them what it’s like to yearn for a friend. Just one.

 

We tell them what it is like to live with autism.

 

I can’t speak for you. Your experience is different than mine.

 

So you need to tell them.

 

Tell them what it’s like to tear yourself apart every day as the parent (or aunt or uncle or grandparent or cousin or colleague or friend or friend of a friend) of a child who lives with these challenges because you don’t have the tools to make it better.

 

Our children need awareness. They need acceptance and encouragement and understanding. They need patience and compassion and love.

 

They need us to talk.

 

There will always be idiots in the world. There will always be people who will say stupid, insensitive, careless, incredibly destructive things.

 

But there will also be those, like you, who are willing to take a deep breath, stew for a minute, and fire up the megaphone.

 

I’ll see you out there. Look for me. Mine’s the third soapbox to the left.

let freedom ring

  

 

 

Darby and I were holding hands, walking through the parking lot of our local mall this weekend when she broke into song. She’s a break into song kinda girl.

 

My country, ’tis of thee,

Sweet land of liberty,

Of thee I sing;

Land where my fathers died,

Land of the pilgrims’ pride,

From every mountainside

Let freedom ring!

  

As she got to “Let freedom ring” it struck me funny, so I did my best to imitate a ringing phone.

 

“Brrrrring.”

“Brrrrring.”

 

 She looked at me like I had three heads. She looks at me like that a lot.

 

 “Answer the phone, Darb.”

 

She was still looking at me like I might have finally lost it, but she went along with the gag. She pretended to put a phone to her ear.

 

 “Hullo?”

 

 “Hey, there. It’s me, Freedom.”

 

I watched the corner of her mouth curl into a nearly imperceptible smirk.

 

 “The no underpants kind or like liberty?”

 

Oh

 

My

 

Lord

 

Honestly, I’d write fiction, but I could never make up anything better than this.  Damn I love my kids.

 

 

in how many you go?

 

 

*** Warning!  What follows will have no more than a passing acquaintance with the rules of English grammar and punctuation. It’s 5am and I don’t have the patience to edit. Sorry, Mom. ***

We all have challenges. We all have our little quirks and things that we know will be difficult for us. If all goes well, we learn over time how to navigate through those challenges using the various compensatory measures that we’ve gathered or hobbled together over time.

Let me try that in English. Or with long, drawn-out, comma laden (but hopefully illustrative) prose. How’s that for a sentence? Or a fragment? Hey, you were warned.

I’m short, er vertically challenged. Put it however you want folks, I ain’t tall. I’m 5 foot nothin on a good day (and if you want to stay friends you’ll agree that today is a good day indeed, right? Ah, I knew I could count on you.) Anyway, short. Yes. So I wear heels most of the time. I climb on counters to reach things in my kitchen. I tread water when the girls want to ‘hang out’ at the deep end of the pool. When I go to a movie I base my seat on the height of the person in front of me (which used to be more challenging back in the 80s when I lived on Long Island. Holy high hair issues, Batman!).  You get the idea.

I am emotional. Like Mr. Toad’s Wild Ride of  ‘Oh dear, is Mama crying yet again?’ kind of emotional. That kind. And so I make some adjustments. I don’t watch St. Jude’s infomercials. OK, I watch them sobbing until Matt comes in and catches me and wrestles the remote out of my hands, but let’s not get bogged down in details. I do give them money because I can’t not. Yup, double negative. I already apologized, Mom. But honestly, I view it as a moral imperative to give those people everything I possibly can.

But when I get the thank you cards, I don’t read them. With all immensely due respect to Marlo Thomas and all of the angels that work with her, I can’t function if I do. I can’t get halfway through the hand written letters from those beautiful children who struggle with so much more than they ever should – the children who wear their bald heads unabashedly, like badges of their incredible courage. I sob. And I can’t stop. So when I see them in the mail, I leave them for Matt.

I’ve always seen growing up as the process of figuring out who you are -  part of which consists of identifying your strengths and your challenges.  The next part is trying to figure out how to best leverage your strengths and how to most effectively mitigate your challenges to live the best life that you can.

When you add autism into the mix, challenges are par for the course. The magnitude and the quantity may be different, but the process is the same. Identifying them, adjusting for them, continually tinkering to figure out what kind of accommodations work best.

For example, Kendall has a lot of trouble with bright sunlight. So she wears her oh-so-cool pink shades. She is highly sensitive to noise. Therefore we try to warn her right before a loud noise so that she can cover her ears or hum. She gets overwhelmed in restaurants so we always make sure we have an easy escape route so that she can take frequent breaks and walk outside when she needs to.

Mind you, I list these off as though they are so obvious, but each and every one of them has been hard won. Heck, even the sunglasses. Kendall didn’t have the language (or the self awareness?)  to tell us that the sun was hurting her eyes. It took time and observation and some terrible days at the pool before it all started to come together. She only started covering her ears about a month ago and the humming thing still hasn’t completely caught on. She can say it in an exact mimic of Mama’s sing song voice  – “when we hear a noise we don’t like, we can hum” but she really doesn’t actually do it.

But hey, the restaurants? That one works.

But the point I’m pretty sure I’m still trying to make is that almost all of our efforts to teach Kendall involve giving her the tools to compensate for the things that she finds difficult so that she can live comfortably and happily and her endless strengths and talents and beautiful, fabulous, super duper wowie zowie glorious Kendall-ness can shine through. Wow, that was a run-on sentence to beat the band. Man this ‘to hell with grammar’ thing is really liberating.

And then -

And then there are these transcendent moments when Kendall figures it out for herself. When I don’t even know what the heck just happened (yeah, I feel that way a lot in life) and she has determined what she needed and by God grabbed it. That’s what we do it all for.

At bed time last night, we went through our usual routine. After we snuggled together for a few minutes, I told her I was going to go. She said, “in how many you go?”

Ok, end of story. You do get it, right? Hooray for Kendall.

Wait, you’re still reading.

You didn’t get it?

Dang people, you’re gonna have to get better at this.

Tee hee. Sorry. I told you it’s 5am, right? It’s also Friday and I’m feeling giddy. Sue me.

Anyway, I didn’t have the slightest idea what the heck ”in how many you go?” meant either. Until my little rockstar put her tiny little hand in the air with her fingers splayed and said, “Are you going to go in five?”

“Sure, Baby. Do you want me to go in five?”

“Oh yeah” (the latest version of yes that she’s picked up from school. They love to give her little colloquialisms that make her speech sound a little more hmm, well, colloquial than it might otherwise.)

“Ok, I’ll go in five.”

So I held up my hand like hers and I counted down from five, one finger at a time. When I got to a closed fist, I kissed her and told her I loved her for the millionth time. I then added that she is the smartest little five year old smarty pants I know, and then I walked out.

She needed some warning. And she knew it. So she asked for it. And she got it. And then she was ready.

Damn, is she ready. (I just hope the world’s ready for her.)

OK, Mom. Exhale. The worst is over.

1,2,3 eyes on me

For a brief period last night, I couldn’t get Kendall to make eye contact with me.

Indulge me, if you would. I’m going to take a moment and relish that sentence. Roll it around a little bit. For a BRIEF PERIOD I couldn’t get her to make eye contact.

There was another “brief period” a while back where we couldn’t get her to make eye contact. (You know, for like TWO YEARS.) 

We’d walk ourselves in ludicrous circles trying to get in front of her as she continued to turn to avoid having to look at us. Together we looked like a two headed dog chasing its tail. We’d drag objects that she was reaching for up to our eyes to force her to look. Makes me uncomfortable writing that sentence, but that’s what we did. “You want the Dora Book? Give me even the slightest, most cursory glance, somewhere in the general vicinity of my eyes and it’s yours.”

Eventually we moved on to encouraging the full body orientation that they taught her at school. When talking to someone, she would stretch out her little arm and point at them. Eventually her body followed. Her gaze reluctantly came along for the ride. She looked like an English Pointer who had located its quarry, but it worked.

These days, although she still has to be prompted to look at the person she’s talking to, she does it. She no longer points or ackwardly sticks out her chin in their direction. We use the shorthand of  ‘to him, please’ and she looks (briefly) right at her partner in conversation.

So it was a neat (if slightly frustrating) reminder last night of how far she’s come. Isn’t it funny that we often need to slip a bit to see the progress we’ve made?

But neater still was that I knew exactly how to get it back. I knew that the fact that she wasn’t looking at me didn’t mean that we were hopelessly disconnected. I didn’t sulk or pout or retreat.  I didn’t get frustrated or overwhelmed. Yeah, I used to do those things. Oh hell, sometimes I still do. Ok, often. Don’t you? Sometimes? A little? I won’t tell anyone. Your secret’s safe.

But I didn’t. Nope. Sure didn’t.

“Big eyes!’ I said as I crouched down about three feet in front of her. She laughed and came right up to me. She put her little forehead on mine and she opened her eyes as wide as she could, just as I did the same.  ‘Little eyes!” I said, and we kept our absurd posture and squinted at each other, eyes open just enough to see beneath our eyelashes.

“Brown eyes!” she yelled and we opened em wide again. “Red eyes!” she squealed as we squinted again and laughed at one another.

And then she went running off. Our silly little game, perfected after hundreds of repetitions, brought my baby back to me. A little island of intimacy in an otherwise disconnected sea of an evening.

Good enough for me.

we interrupt our usual programming for an announcement

                                      

All right, friends, family, and people that I know and mostly like,

 

Here’s my story (and I’m sticking to it) .. I got an unexpected delivery last night from the Apple store. It turned out to be a brand spankin new 80GB iPod Classic courtesy of Autism Speaks. It was apparently donated as an incentive prize for last year’s walk. Thanks to the incredible generosity of people like you, I was able to raise a staggering (and incredibly gratifying) $17,000 on behalf of Team Kendall for autism research last year. (By the way, I still am not over just how amazingly supportive you all are – truly.) And so, because I raised so much money, the nice folks at Autism Speaks got together with Apple and gave me this donated iPod as a way to say ‘thank you.’

 

Well, that’s all fine and dandy. The iPod’s seriously nifty. It puts the one I have to shame. Makes it look like an abacus. It has a 2.5″ color display. It holds 20,000 songs. It plays 100 hours of video. Hell, this thing will wash your kitchen floor for you from the sound of it. Check it out here.

 

But here’s the thing. I can’t take it. It doesn’t feel right. I walk because I am determined to make life better for my beautiful baby girl and everyone else like her. I beg for your support because I know – I KNOW – that together we can make a difference. I walk because, as a mother of a child with autism, it is impossible not to. Taking a prize for walking would be like getting paid for taking my kid to the park. It just feels wrong.

 

So I’ve devised a plan. Still with me?? This is where you come in.

 

I’m going to essentially raffle it off. Here’s how. For every $25 that you donate to Autism Speaks on behalf of Team Kendall, you will get one chance to win the iPod. The more you donate, the better your chance to win the aforementioned iPod. Still here? Not much longer, I promise. For example, if you donate $250, you’ve just gotten yourself 10 chances to win.

 

I will keep the raffle open for one week. Next Wednesday, July 23rd, I will take all the chances, put them into the form of tickets, and place them into a hat. Kendall will draw the winner. I’ll happily take care of shipping and insurance charges.

 

What do you think? Sound like a good plan?

 

Well then, get moving! Click here to start racking up chances and good Karma all at the same time.

 

Oh and pass it on to anyone else you think might have even a passing interest!

 

Good luck and THANK YOU! THANK YOU! THANK YOU!

 

P.S. If you already gave, well, you rock!