angry sad

 ****

“I will tell you this, as a parent of a 4th grader, a few short years past the kinder age of parent shock and worry, and dawning the crest of oh-my-God-Junior-High.

It gets better.

And it gets worse.

And better again.   

And so on.”

~ My dear friend and guru Drama Mama

****

We regret to report that Pollyanna is struggling for her life this morning after being hit by an oncoming train over the weekend.

Witnesses say that Pollyanna was whistling a happy tune as she skipped blissfully along the railroad tracks on Saturday afternoon when the reality-bound train came up behind her without warning. ‘There was no way to break in time,’ said the conductor. ‘Once this thing builds steam, it takes a hell of a lot more than one little mama to stop it. ‘

Witnesses said that Pollyanna was flattened like a pancake upon impact. ‘It looked like the crash sucked the life right out of her,’ said one passenger.

Friends and neighbors cautioned that it was far too early to count this little lady out. ‘She’s full of piss and vinegar, that one. Don’t be fooled by all the cotton candy talk of unicorns and lollipops and kindergarten ass-kicking. That one’s a fighter all right. She’ll be back.’

 ****

I bumped into a fellow mom this weekend. She is a card carrying member of the top secret French speakers’ club. Our shared language serves as a password. A nod and a hug say all is secure.

She told me a story.

Her son goes to school with Kendall and Darby. He is a lot like Kendall. He is sweet and funny and affectionate. He is bright and loving and inquisitive. He also happens to have autism.

He was teased at his elementary school. Kendall’s elementary school. OUR elementary school.

She was heartbroken.

He had come home upset, shaken. “I am angry sad,” he had told her. ”They laughed at me,” he said.

I could see the push and pull as she told me the story. She was so proud of him. He had found words for EMOTION. He had been able to TELL HER how he FELT. He had really TALKED to her. These are not small things. Quite the contrary. As she told me this part of the story, she was beaming. 

I would be too. Kendall’s not there yet. I can’t imagine having a conversation like that with her, quite frankly. Not yet. Hungry, sleepy, happy. That’s what we’ve got so far. I understood her pride.

But she was devastated. HELPLESS. Small. They had laughed at her son.

The conversation all but crushed the bravado of Friday’s kick-ass, top of the world, ‘look ma, no hands’ post. It took me right back to the edge of the swimming pool.

It was so raw, so visceral. This Mama Bear whose heart was breaking for her vulnerable cub. ‘Angry sad’ he had said. 

We cried together. I held her as she sobbed. There was comfort in validation, but not enough.

I wanted to scream. 

I don’t know what to do other than to talk to people. To educate them one by one. If they don’t know who our children are and what they face, then how the hell can they help us protect them? If we hide, do we not bear some of the responsibility for the teasing? Are we not to some degree complicit in making our children angry sad? I refuse to believe that there’s nothing we can do. I’m tired of helpless.

Our children, even our typical children, will face hurt. They have to. Life comes with trials and tribulations that serve to shape us and make us stronger people. But not this type of hurt. No, our babies don’t need to suffer at the hand of ignorance.

We can do something, damn it. Don’t tell me that we can’t.

The mom asked me how it is that we can be so public about Kendall’s autism. For what felt like the millionth time I answered that I don’t know how we could NOT BE.

She asked me how we explain things like the walk. How do we justify that, she asked? How do we tell Kendall that we are fighting autism, when autism is inextricable from who she is? Are we not implicitly telling her that we are ashamed of who she is?

No, we’re not.

Autism comes with significant challenges for Kendall. You, dear reader already know that. In kindergarten parlance, some things ( a lot of things) are harder for her than for her classmates. We walk to support researchers who seek to find ways to ease those challenges – the rigidity, the panic, the overarching anxiety, the hyper sensitivity to her environment. What we fight is her constant discomfort.

We do not want to change who Kendall is or how she views the world. I never, ever want to take anything away from her that makes her happy. But if we’re being honest, a lot of what autism is for her ain’t so happy.

Mostly though, we talk about autism in terms of awareness. We walk for it and we talk about it expressly in order to educate the world about the fact that there are people out there, lots and lots of people, 1 in 144 people, who experience the world a little differently than the rest of us might expect. Sometimes they experience it in a way that can be extremely difficult, sometimes in ways that can be incredibly enlightening and rewarding. 

I feel like a broken record. I’m tired of hearing my own voice.

But if we don’t talk about it, who will? If we don’t stand up and say that it’s ok to be different, who the hell will? If we don’t talk to parents of typical kids, how on God’s green earth will their children ever know that they can’t laugh at the weird kid in the corner who doesn’t quite fit the mold or the odd little girl who runs up to them and starts yelling entreaties to ‘do Deebahs’ with her?

That kid is my kid. That kid is your kid. Hell, we are all that kid. 

I am frustrated. I am tired. I am angry. 

He was laughed at. 

Not ok.

Not on my watch. Not in my own back yard.

Do something.

I’ve been eating like I’ve had a tip on a famine for weeks now. I’ve been anesthetizing myself with food. I’ve been doing too much. I’ve been stretched in too many directions.

Enough.

It’s time to get focused, friends. This ain’t a one round fight. I got up at 4am this morning and parked my fat ass on the elliptical. Thank God for Desperate Housewives. Long live the DVR!

I’m going to get myself in fighting shape. I’m in for the long haul. Hell, maybe I’ll train for a marathon and run for autism awareness (says the girl who is so far OUT of shape she’s forgotten what IN shape even is and oh, who really only runs when being chased).

But why not? Might as well take my metaphor off the page and make it literal. I’ll get back to you on that.

Regardless,  I will not spend another day like I did yesterday. Brooding and licking wounds. Wandering aimlessly around the scene of a wreck that technically wasn’t even mine.

Well, maybe just one more. But that’s it.

wonder

people see me
I’m a challenge
to your balance
I’m over your heads
how I confound you
and astound you
to know I must be one of the wonders
of God’s own creation
and as far as you see you can offer me
no explanation

I believe
fate smiled and destiny
laughed as she came to my cradle
“know this child will be able”
laughed as she came to my mother
“know this child will not suffer”
laughed as my body she lifted
“know this child will be gifted
with love, with patience
and with faith
she’ll make her way”

she’ll make her way

~ natalie merchant ‘wonder’

My daughter is kicking @ss in kindergarten. How’s that for an opening sentence?

She is exceeding everyone’s expectations. Quite frankly, she’s even exceeding mine.

We’re making our way through the transition. Her team is in place. The plans are in action. All hands are on deck.

The scratching, clawing, sweating, meeting, collaborating, asking, seeking, tweaking, researching, night terrors – worked. OK, maybe the night terrors were superfluous. Maybe not. I don’t care. Please see “My daughter is kicking @ss in kindergarten.”

Don’t believe me? The following are paraphrased from various team members this week.

“Kendall’s job at morning meeting this week is ‘teacher’s assistant’. She’s doing it! She does everything Ms. Teacher does! You wouldn’t believe it if you saw it! She stood in front of the kids and sang ‘1-2-3 eyes on me!’”

“At the end of our session she gave me a hug, so I felt very special today!”

“No yelling today! Very few breaks too!”

“We gave the bear a ’sad’ face. I told her the bear might be sad because he lost a toy, so Kendall got a toy and gave it to the bear and we changed the face back to ‘happy.’”

“Lots of singing in music today. Great job participating.”

“Kendall colored with C and M. She also drew a red nose and cheek on her face with red marker. Sorry! (She does look cute though.)” (OK, so this one isn’t necessarily the best evidence of kick@ss behavior. But it’s funny.)

“Kindergarten assembly today. Great sitting and listening.” (What? Seriously? You’re tellin me my girl dealt with an ASSEMBLY? She SAT and LISTENED at an ASSEMBLY? Rub eyes. Read again. Yup. That’s what it said.)

“We were walking down the hall and Kendall was rubbing her body against the lockers. I figured she was looking for some vestibular input so I asked if she wanted a hug. She totally let me hug her! It seemed to help.” (Wow. So. Wow.)

And my personal favorite from my personal favorite member of the team - little boo herself:

Getting into the car after school:

“Could we do that again, Daddy?”

“Do what again, honey?”

“We would go to school again?”

“Yes, baby, we sure will.”

Tired smiles.

Yes, Natalie. With love, with patience, and with faith she’ll make her way. She IS making her way. And I am so proud to follow her along the path.

defining moments

“I yam what I yam.”   

~ Popeye

When Darby was on the Ralph Lauren shoot, one of the kid wranglers had the little ones in stitches with her rendition of the Little Einsteins theme song. “We’re going on a trip in our favorite rocket ship/ Zooming through the sky / the little Ralph Lauren models.” Darby loved the wrangler and she thought it was the funniest thing she’d ever heard.   

When we came home and settled back into reality, I had a talk with her about why it is so important to remember that although she had just had an amazing experience, it did not change who she is. We talked about the fact that some of her friends might ask about her trip and that she would need to be very careful about the way that she presented her answers so as to avoid sounding boastful.

At one point she said, “But Mama, I am a model now.” I cringed as I explained that, no, my love, you are not a model now. I told her that she is a child. An amazing, breathtakingly bright and sensitive child. She is a sister. She is a daughter. She is a second grader who ice skates, sings, and creates fabulous art. She is generous and loving and creative beyond measure. She is a wonderful little person who has had some incredible experiences. In other words, she is a kid who was lucky enough to have gotten a chance to do some modeling, but that does not make her a model.

It terrified me to think that a seven year old, my seven year old, could define herself with this one thing that she had done.

And it struck me that we all allow one thing to define us at times. Obviously, as we get older, we are more easily categorized. Someone who teaches is a teacher; someone who writes is a writer. Someone who stays home with his or her children is a stay-at-home parent. {Caution random rant about to begin.} Please, for heaven’s sake don’t call them ‘full-time’ parents. With all due respect, I cannot and will not abide by the converse implication that I am a ‘part-time’ mother. I don’t know about you, but there is never a time when I am NOT a mother. {Random rant comes to a close.}

But this definition thing, there’s more to it, isn’t there? Am I simply a mom? Or do I need to say that I am a special needs mom? An autism mom? A mom of two? A working mom? A tired mom? Well, yes. I am all of those things. I am also a wife and a daughter and a sister and a cousin and a damn good friend. I am an awareness advocate (Autism Speaks said so, so it’s got to be true). I am a board member-at-large (I love that one), a PTO liaison, a mama blogger, an amateur photographer. I’m a shopper extraordinaire, a children’s fashion aficionado. I’m a woman with a shoe problem. I’m a resource for parents. I’m a Rock of Love addict. There I said it. Don’t judge.

Point is, the list could go on for a while. And it leads me to the real purpose of this exercise.

None of us can be defined by one aspect of who we are. Especially our children. It’s absurd.

My younger daughter has autism. But autism is not who or what she is. I do not discount that her autism colors her entire experience. Her character shines through it but cannot necessarily be separated from it. Autism is the filter through which she sees, smells, hears, touches and tastes most of her world. But it is not HER.

She is funny. She is sweet. She is beautiful. She has a smile that lights up a room. She is caring and generous and has a mind like a steel trap (yes, Dad, I stole that expression among scores of others). She harnesses the energy of the universe when she laughs.

I used to bristle at the PC nature of ‘person first’ language. Who cares if I say I have an autistic daughter rather than saying I have a daughter who has autism? I was sure that the difference was nothing more than semantic.

But I get it now. I really do. Because if I’m going to say that I have an autistic daughter, I may as well say that I have a funny, sweet, beautiful, caring, generous, smart, brown haired, brown eyed, caramel skinned autistic daughter whose favorite color is red, number is 2, letter is Y. All of those aspects of her being are important. None of them alone captures her essence any more or less than any other.

My daughter has autism. I refuse to let autism have her.

Ed note – I googled ‘person first’ language in hopes of hot-linking the term to a site that might offer readers some further insight into its meaning. When I did, I came upon this wonderful essay written by Jim Sinclair, an autistic person on why he would prefer that we call him just that. Read it. See what you think. I agree that the societal connotation of autism is the real culprit here. We’re working on that. Hence one of my myriad titles ‘awareness advocate.’ But I still don’t want my daughter reduced to this one aspect of who she is – good, bad or otherwise – no matter how over-arching it may be. No more than I want her sister to think of herself as ‘a model’ at age seven.

Maybe someday Kendall will look at me and say, “Mama, you got it all wrong. That guy was right.” I can’t wait for that day. I will gladly defer. In the meantime, I have to do my best to worry and whittle and knead out the path that I think makes the most sense. I’d love to hear what you think.

back to school night

For a charm of powerful trouble, 
Like a hell-broth boil and bubble.

Double, double toil and trouble;        
Fire burn, and caldron bubble.

~ The three witches, Macbeth

Spoiler alert: Pollyanna has been unceremoniously kicked to the curb

Am I the only one at back to school night who has an overwhelming urge to curl up in the corner and sob? My husband looks at me like I have three heads and pleads with me to tell him what’s wrong. My best Mom-friend sighs. She’s come to expect the sniffles. A fellow SPED parent winks at me from across the room. And I just want to run screaming from the building.

I don’t, of course. I sit dutifully listening to our principal as she outlines her vision of diversity and community. I think about what those two words have come to mean to me. Bubble.

I nod and smile as Matt’s co-PTO president stands at the podium talking about her memories of her adorable little girls starting kindergarten in these very halls. She reminisces about being overwhelmed with pride when her youngest one stepped onto the big, open field of elementary school. I remember being overwhelmed too, but not the same way. And it was two weeks ago. Bubble.

I step to the microphone to introduce myself as the liaison to the Special Education Parents Advisory Council. If I were a cartoon I’d be drawn as one big, raw, exposed nerve.  I speak without notes, flail slightly, forget two of my most pressing points. I look out at the sea of faces. Standing in front of a microphone, there is so much that I could say to these people. I want to plead with them to teach their children to respect each other. To implore them to lead by example. To beg them to talk to their kids about tolerance. To ask them to help me protect my baby from hurt. I don’t. I make my stilted announcements and step down. Bubble.

We file out of the auditorium and make our way to our children’s classrooms to meet their teachers. Kindergarten and second grade are meeting simultaneously. Matt says, ‘You go to whichever one you want. I’ll take the other.” I melodramatically tell him he’s asking me to make Sophie’s Choice. Bubble.

I choose Darby’s room. My thinking is that I have fairly regular contact with Kendall’s teacher, aide, inclusion facilitator and therapists.  I have access to them when I need them. We have meetings scheduled. I read reports every day about Kendall’s work.  Yes, Darby’s it is. Bubble.

I walk into Darby’s room and shuffle around for a minute with the other parents. Matt pops his head in en route to the kindergarten room. I haven’t yet melted down completely, so hey, that’s good. I tell him I’ve made a mistake. I need to be down in Kendall’s room. I ask him to take notes and I run out before he can answer. Darby tells me about what she does, I reason. I supervise her homework. We TALK about it. She can TELL me what she is doing in class. Her little sister CAN’T. Bubble.

I make it into Kendall’s classroom with plenty of time to spare. Parents are milling around a table upon which are laid various sign-up sheets. Library Duty 12pm, Guest Reader 9am, Room Parent, Art Assistant. Moms eagerly lap up the open slots. I bounce between the sheets aimlessly. All of these opportunities to volunteer are DURING THE DAY. WHILE. I. WORK. Friggin Bubble.

I write my name in on March 6th as a guest reader. I will take the day off. What the heck? This will be how we use my vacation days this year. Who can afford to travel anymore anyway? Besides, it’s Darby’s birthday, so I figure I can make it a special day for her too. Matt runs into the room, quickly signs up for nearly everything left and then breezes back out to get back to the second grade. He doesn’t have to think twice about how he will ‘manage’ it. Bubble.

The teacher begins to present the curriculum. Funny to think about kindergarten HAVING a curriculum, but of course it does. She keeps mentioning the social aspects of the class. They are threaded throughout the presentation. “It is kindergarten after all.” She talks about the importance of building relationships, negotiating difficult situations in the classroom, remembering to use words. Bubble.

She keeps saying, “I’m sure you’re hearing about this.” and “Your child will likely mention that.” Bubble.

Now, mind you, there are good things too. Yes. Really good things.

Kendall’s teacher tells me that Kenz had a little posse of kids around her at choice time today. She was directing them.

“You would  say ___.”

“Now you say it quietly.” (whispering)

“Now it would be LOUD.” (shouting)

They complied. Happily. They were laughing.

This is largely how Kendall interacts with us at home. She tells us what to say. I always worried that the kids in school would bristle at being ordered around. She’s made it a game. She’s LEADING a group of FRIENDS.

HUGE.

The P.E. teacher stops me in the hall to tell me how well Kendall handled her class today. “There was a lot of yelling involved in the game we played. I asked [Atlas] before we started if she thought Kenz could handle it.”

I still hear her talking, but I am basking in the glow of “I asked [Atlas] before we started if she thought Kenz could handle it.”  The P.E. teacher took time to check with Kendall’s aide before proceeding with a game.

HUGE.

So yes, there were good things too. Very good things.

There were even drinks afterwards. Lychee juice, sake, grapefruit vodka yummy drinks. In pretty glasses. With funny people who laugh at dirty jokes.

But much as they tried, they couldn’t counterbalance the Bubbling. Pollyanna is cute. She’s got a lot of good things to say. But she can only stick around here for so long before she wears out her welcome. Quite frankly, she was beginning to grate on my nerves anyway.

johnny

 

 

Ok, so I’m Pollyanna this week. Sue me. But honestly, if I look too long at the heavier side of things right now my little head will explode. And I don’t have that luxury. Too many balls in the air.

So I choose to find inspiration where I can.

On that note, allow me to introduce Johnny.

We all can make a difference. We all have a significant and unique contribution to make in this world. No matter who we are or what we do.  We can make the world better. No matter what challenges we may face.

Put yourself out there. Take a risk. Sometimes you fall flat, but in the end it comes back to you tenfold.

Thanks for the reminder, Johnny.

we get out of the way

“People, I just want to say, you know, can we all get along? Can we get along? Can we stop making it, making it horrible for the older people and the kids?…It’s just not right. It’s not right. It’s not, it’s not going to change anything. We’ll, we’ll get our justice….Please, we can get along here. We all can get along. I mean, we’re all stuck here for a while. Let’s try to work it out. Let’s try to beat it. Let’s try to beat it. Let’s try to work it out.”

~ Rodney King, May 1, 1992 (the third day of the L.A. riots)

“Be excellent to each other”

~ Bill and Ted      

Driving home from work on Friday evening, I was spent. I was physically and emotionally drained and I wanted to get home to my babies.

I was sitting at a light in the middle of my town, a badly designed mini-metropolis whose chaotic center regularly incites road rage. Drivers in my town are rude, frustrated, and typically inept in the best of circumstances. By 5pm on a Friday it ain’t pretty.

I heard a wailing siren off in the distance. It took a minute to figure out where it was coming from. When it became apparent that it was coming up directly behind me, I popped the car into gear and pulled over as far as I could.

I watched the cars on either side of me follow suit. One by one they moved aside, parting like the Red Sea for Moses. An ambulance zoomed through the center of the emptied road and then we all began to file back into place.

A small moment perhaps, but it struck me - the beauty of this communal caring. For all of the incredibly divisive rhetoric out there – for all the anger and dissension – we as a people – as a community – care for each other. Even when we’re at our wit’s end.

None of us knew if that ambulance was headed to the government subsidized housing projects by the highway or to the rolling hills of the estates to the West. We didn’t know if the person in need was black or white (or blue or red). We didn’t know if they were young or old, male or female. We didn’t know if they believed in the war in Iraq or if they found it to be morally reprehensible. We didn’t know if they were pro-choice or if they longed to overturn Roe v Wade. We couldn’t have cared less if they believed in evolution or if they were convinced that the world is flat.

It mattered not. What we knew, all we needed to know, was that someone was in trouble. And we got out of the way.

Say what you will about my country, but I will tell you one thing. For all the talk, all the anger, all the abuse of hurtful words, when it comes down to it, we do care about each other. When one of us needs help, we get the hell out of the way.

an ode to single moms

I am tired.

Wait, let me rephrase that.

I. Am. TIRED.

Yes, that’s better.

This week has been insane. The market volume and volatility has been quite literally unprecedented. She (anyone doubt that’s the right gender pronoun for this tape?) twists and turns like Mr Toad’s Wild ride as those of us on the institutional side of Wall Street do our best to provide liquidity, maintain order and stability, and try desperately not to kill each other in the process.

Matt has been out of town all week. He will return tomorrow to find me pretending to be happy that he had a nice break with his friends while I not so subtly grind my teeth.

I mean, I am happy for him. He deserves a break. He really does. But. Um. NOW? Right now?

Single moms, I bow to you. Treat yourself to something tonight. Make it good.

On Wednesday I thought about putting up a sign that read

“If you need me, I will be under my desk in the fetal position”

Didn’t seem wise.

This morning, I got a call from Julie, who is acting as a nanny for me this week while Matt is gone (since if I take one more hour off work I’m guessing I may as well not come back).

It was 8:27 am and the markets were already overheated. The s&p futures were limit up, the DJIA futures were looking up nearly 400 points and the information (bailout! SEC bans on short selling in financials!) was flying at us so fast there was barely time to distill it no less disseminate it. I was on one line with another on hold when she called.

“Jess, it’s Julie.”

I could tell by her voice that this wasn’t going to be good.

“I hate to call, but I didn’t know what to do.”

Julie always knows what to do. Not. Good.

I could hear Darby crying in the background. Not Kendall, Darby.

Her voice was pleading. “Julie, please ask Mama to come home.” Sob.

For the sake of my daughter’s privacy, I won’t get into the specifics of the situation. Suffice to say she was having some significant trouble in the bathroom. For half an hour. She was in pain, frightened and miserable.

Someday we’ll both likely find the whole thing funny. There’s nothing like potty humor for a good laugh.

But when you’re seven and your tummy hurts like hell and you can’t um – get it out (it’s worse than that, but that description will have to suffice), it ain’t funny. When school starts in three minutes and your babysitter is there and your dad or mom is not, it ain’t funny. When you’re begging your mom to come home (which you NEVER, EVER do) and you don’t understand why she can’t, it ain’t funny.

When I’m trying to field a stream of literally constant calls from institutional traders who can’t be asked to wait and keep my head above water and my baby’s crying, it ain’t funny.

I calmed Darby down and gave Julie the best instructions I could muster over the phone. I called a neighbor and dear friend and asked her to take Kendall to school. There are approximately three people in this world that could do that. She’s one of them. She was at my house not two minutes later.

I got a call at 9:15 from a happy but hurting Darby. An hour and fifteen minutes from start to finish, but she was ok.

I cajoled her into going to school, despite her nervousness about showing up late. (“These kids are nosy, Mama. They’re going to want to know where I was.”) I thanked Julie and I promised her hazard pay.

All while continuing to answer the questions that were flying at me electronically and taking note of the building queue of phone calls to return.

Life as a one armed paper hanger.

Yes, I am tired.

But it’s Friday. 

I will curl up tonight and sleep like the dead. Oh, wait, in a fit of pique this morning I promised Darby that she could sleep in my bed tonight (just like when we were on our trip, Mama, please?”) So I’ll sleep like the undead tonight. The kicked and shoved and drooled on not quite dead.

I have no plans for tomorrow. None. I will not make any. I will amble my way through the day, hugging my girls as much as they’ll let me. Don’t call. Don’t ask to come over. Don’t ask me to come to your place. It doesn’t mean I don’t love you.

It just means I’m tired.

towanda

Buddy: Did I ever tell you about the oysters?

Idgie: Oysters?

Buddy: I didn’t tell you bout the oysters? Think about all the millions of oysters lying around on the bottom of the ocean. Then one day, God comes along and he says, “I think I’m gonna make that one different.” and you know what He does? He puts a little piece of sand in it. And guess what it can do that the others can’t.

Idgie: What?

Buddy: It can make a beautiful pearl.

Idgie: What if God made a mistake?

Buddy: Well, the way I figure it, He never makes mistakes.

                 ~  Fried Green Tomatoes at The Whistle Stop Cafe

 

I’ve been asked to present to a graduate level neurology class studying autism at M.I.T.

So, like, did I sound all, you know CASUAL when I just said that? Cause I’m like totally trying to sound like I’m all ‘Oh, I’ve so been there before. I mean, hey, it’s only like M.I.T. You know, like, whut – ever.’

All except NOT.

M.I.T. has asked me to speak. I mean, honestly? I can assure you that there would be a line of my former teachers and professors who would get a good hearty laugh out of that one. Or at the very least a good head scratching. And an even longer line of professors who would say, “Jess who? You say she was in my class? Are you sure?”

But as it turns out, a woman whose title is longer than my resume seems to think that I have something worthwhile to say. And you know what? It’s taken me a little while to come around to this, but I think she’s right.

I have a parent’s perspective to offer. I have experience to share. I have my beautiful, wondrous, amazing daughter to brag about.

The daily life of autism is not about the nuts and bolts of mirror neurons or serotonin levels or the intricate workings of neurotransmitters. For us, autism is about people. It’s about experience. Autism is a set of criteria that loosely links a group of people that represent an entire spectrum (pun intended) of the human condition. It is NOT a definition of a person or even a description of any one person’s set of behaviors or challenges. And this Professor of Visual and Computational Neuroscience in the Department of Brain and Cognitive Sciences at M.I.T. (Huh?) sees that. Thank God there are people out there who see that.

“The intention of the class,” she said, “is to try to distill some coherent threads from the somewhat heterogeneous research and clinical literature on autism. This will be very useful for the students as they try to identify research avenues that they might want to focus on in their careers.”

So I get the (daunting) privilege of helping to guide the next generation of researchers. Wow. I mean, WOW. I get to offer them the color commentary that can help direct or at least help to flesh out their reams of data. I get to thank them for committing their formidable brain power to this incredibly worthy and desperately pressing pursuit.  I get to remind them why it all matters so much. 

And, get this – I get to recommend reading. Seriously? I think that might be the coolest part. I briefly considered telling Professor Really Long Title that I’d like the class to read  Fried Green Tomatoes at the Whistle Stop Cafe. Granted, it has nothing to do with autism, but I whole heartedly believe that no human being should go through life without at least once invoking Towanda, the Avenger. Certainly no mom. Absolutely, positively no special needs mom. If you don’t know Towanda, click thee to Amazon post haste.

But instead, I chose to stay on topic. I suggested, of course, that they start with Temple Grandin’s Emergence and John Elder Robison’s gripping tour d’Aspergia, Look Me In the Eye. Nothing beats a first hand account.

I was starting to feel pretty darn confident about this whole thing. And then Professor Really Long Title told me that the class would be eighty minutes long. So, um, hmm. Maybe I’ll include Fried Green Tomatoes after all.

aut viam inveniam aut faciam

“If everything seems under control, you’re just not going fast enough.”

- Mario Andretti

We interrupt our usual programming for a public service announcement.

Why? Well, in part because I already wrote this and I don’t have time while wading through daily life, the wreckage of Lehman, the bailout of AIG, the acquisition of Merrill, my husband on a plane to Vegas for the rest of the week or anything and everything else currently rolling down the hill at me to find form for everything else rattling around in my head. (Vive la runonsentence!) Oh, and because it might actually be helpful to those of you who are looking for a way to talk to your young children about autism and respecting and understanding differences. Whew. So here goes.

After watching the video of my speech at the kick-off to the Autism Speaks Greater Boston Walk, a dear friend of ours came to me looking for help. His two sons, who are five and seven, attend school with both of my girls.

My friend said, “I’ve listened, Jess. I’ve really listened to what you’ve said and I want to help. I want to talk to my kids and teach them how to be good friends and tolerant little people. But I have no idea where to begin to explain autism to a five year old or to tell my little boy how he can help. What do I do?”

Yes, I know how blessed I am (again) to have friends like this in my life. I thank my lucky stars every day and I tell them enough that they seem to have gotten a little tired of hearing it.

So I went on a mission. I looked everywhere for appropriate books or materials, but I came up dry. There’s a lot out there, but I found most of it to be either too abstract, too specific or not even remotely age appropriate. Incidentally, if you have kids over six, this book is FANTASTIC (and half the profits go to Autism Speaks! Woo Hoo!) But I just couldn’t find anything for the five and under set.

.

So I did my best to create something. Aut viam inveniam aut faciam – I will find a way or I will create one. Giddy up.

With the IMMENSE help of one of Kendall’s former teachers, the fabulous Mrs. Jen, I put together the ‘book’ that you will find below. When I say ‘help’ I mean that she basically re-wrote my drivel and turned it into something useful. Hooray for Jen!

As you’ll see, it’s in very rough form. The formatting on wordpress is a mess, not to mention that it contains random pictures that I pirated off of Google Images, so um, hmm, don’t go publishing it or anything, ok? But I think that it just might work well enough to help my friend’s son gain some understanding of our kids.

I guess I figure that if we’re going to ask the rest of the world to educate their children about ours, the least we can do is to give them the tools to do so.

Hopefully you’ll find it useful too.

****

I have a lot of friends at my school. I like to play

different things with different friends.

Some of my friends like to play trains.

Some of my friends like to play soccer.

Some of my friends like to play Caribou.

It is fun playing different games

with different friends.

***

Everyone has things that they are good at.

Some of my friends can run fast.

Some can swing really high on the swings.

Some of my friends can use toys

to tell great stories.

Everyone needs help learning

how to do something.

Maybe they need help knowing

how to hold a pencil.

Maybe they need help

learning how to pump on the swing.

Some kids are learning how to use

different toys in different ways

and that is OK.

I can help my friends

know how to use toys that I am good at

and they can help me learn about new toys.

I can get a teacher and ask for help

if I am not sure how to play

with a friend.

There are lots of people that do things

differently from me.

They might look different from me too

and that is OK.

Some people need help walking

so they use a walker or a wheelchair.

Some of them have allergies

and need help making sure they

eat things that are safe for them.

Some people may use their

bodies in different ways.

Maybe they like to play with their hands

and maybe they like to move their fingers

near their face

or jump up and down

when they are excited.

It is OK for people to use their bodies

in ways that are different from me.

***

Everyone is afraid of different things.

Some people are afraid of spiders.

Some people are afraid of loud noises.

It is OK to be afraid of things.

If I see a friend who is afraid

of something, I can help them feel safe

by telling them it is OK,

or I can get a teacher to help them.

Everyone comes to school to learn.

We are learning how to

read, how to write, how to be a good friend,

how to do math

and lots and lots of other things.

Some kids need a little more help

in learning new things.

For some kids, it’s hard to sit still

because their body feels like it

wants to move.

For some kids, it’s hard to hold a pencil

because their fingers want to move a different way.

Maybe it’s hard for some kids to play a game

because they don’t understand the rules

or they don’t know what to do with the toys.

For some kids,

it’s hard for them to talk to friends

because they don’t know what to say,

or maybe they get scared or shy.

Maybe they might say silly words

that don’t make sense,

or use a silly voice to try and play with me.

If a friend comes to me

and says or does something silly,

maybe they want to play with me.

I can ask them if they want to play

by using my words

or giving them a toy

or taking their hand

and helping them play the game.

If I see a friend who looks sad or is alone

I can ask them to play with me.

That’s a nice thing to do.

Maybe we can run or climb the slide

or go to the swings.

It will make me feel good

to help include my friend in the fun.

If I don’t know what to do,

I can get a teacher to help me play with a friend.

Everyone talks differently.

Some kids talk just like I do,

and some may sound different.

Maybe their family speaks a

different language.

Or maybe they might use their words

in different ways

that might sound silly to me.

Maybe I sound silly to them sometimes.

Sometimes my friends

may not always understand what I am saying.

Sometimes I may not understand

what they are saying.

We can help each other understand.

If I’m not sure how to play with a friend,

I can ask a teacher for some help.

The teachers can always help me talk to friends.

***

Sometimes kids say things that are mean

or not true about how someone looks talks or acts.

Maybe they might call them names

that will hurt their feelings.

That is called teasing and

it is very hurtful.

I would be very sad if someone teased me

and said things that were mean or not true.

I would never, ever say things that are mean

or tease the other children at school.

If I hear my friends teasing or being mean

to another friend, I can tell them to stop.

If they don’t listen to my words,

I can get a teacher for help.

My Mom and Dad and teachers

will be so proud of me

when they see what a good friend I am.

Hooray for me!

voicing dora

 

Have I told you about Julie yet?   

We knew we’d hit the babysitting mother lode when we first interviewed her nearly two years ago. After talking with her for a while, we mentioned that Kendall had some challenges that we needed to make her aware of. I held my breath, waiting to see what her reaction would be. She didn’t so much as flinch.  

She had a full time job, so we asked why she was looking to babysit. “Oh, that’s easy,” she explained. “At my last job I got to work with kids all the time and I really miss that.”

“Oh, what was your last job?” we asked.

“I worked in an in-patient psychiatric facility. I organized crafts and activities for the kids. Many had significant behavioral challenges. Some were non-verbal. It was really rewarding.”

The skies opened and the Seraphim sang. No way we were letting this one go. Once she had told us about her uncle with autism and their annual pilgrimage to Disney World, I was ready to ask this girl to move in. (OK, not literally, but close.)

For the past two years now, Julie has sat for our girls for a couple of hours almost every week. The ease of walking out of the house knowing that she can handle anything thrown her way is invaluable. We don’t need to explain anything, prepare anything, DO anything. She knows the drill. She even knows what to do when the drill falls apart.

I thought it couldn’t get any better than knowing that my kids are safe and well cared for when Matt and I go out (which we HAVE to do for our sanity, our relationship – hell, just so we can introduce ourselves to each other once a week).

And then came this.

On Friday, Darby and I were still out of town. Matt had an invitation from a friend whose movie, Trouble the Water was premiering in Boston. Julie came to the rescue and sat with Kendall for a few hours so that Matt could attend the premiere. Incidentally, if you didn’t know any better, you might actually think that Matt and I were pretty cool last week. What with movie premieres and fashion shoots, well, you know how it is. Just another week at the Wilson’s. Or, um, NOT.

It’s rare that Julie has time with Kendall alone. Little Miss Darby has decidedly cemented her status as Julie’s pet and she doesn’t leave a lot of room for attention to be diverted. That’s not to say that Julie isn’t great with Kendall, but she doesn’t get much of a chance to really focus on her with big sister forcefully stealing the spotlight.

But Julie relished her time alone with little Boo. And after reading this, she took it upon herself to write the following, excerpted from a much longer, incredibly detailed e-mail.

I still marvel at how blessed we are to have such caring people in our lives. Thanks, Jules.

Hey Jess, I know you miss Kendall, so I figured I’d give you a play-by-play on the evening. She’s always a trip, but somehow, even more so when it’s just the two of us.  

…..

She asked me if we could “play the purple game before bedtime”.  Like I told you on the phone, she went and got one of her Dora dolls, sat down next to me and said “Dora would play too”. She proceeded as if it were routine (I’m used to Darby telling me several of her stuffed animals are on my “team” in Monopoly Jr., but I was floored that Dora chose to join us for a game of memory).  Kendall took a turn, then Dora went, and then me.  She made Dora pick up each card with her little Dora hands, turn it over and in a really high pitched Dora voice, read the card aloud.  If it wasn’t a match, Dora sounded disappointed.

When she knew where cards were on her turn, she would wait to let Dora find the matches (princess, star catcher, apple picker) excitedly flipping them over with her little Dora hands. You’ll never guess who won, by the way, with 5 pairs…I had 2, Kendall had 3.  We congratulated Dora on her victory and Kendall seemed thrilled.  I asked if she wanted to play again, to which she replied “I am putting them to bed”. Pretty sure that was a no. 

Holy Moly! This is HUGE! I mean HUGE! Dora has a voice! Kendall has perspective! The Theory of Mind that we saw emerging here is expanding and taking new shape. “If it wasn’t a match, Dora sounded disappointed!!!”

I was so excited when I got Julie’s e-mail that I foolishly tried to share the news with one of the moms on the Ralph Lauren adventure. You know that look that a golden retriever gives you when you have a ball in your hand and they expect you to throw it, but you hang onto it for a while? Their little doggy head tilts to the side and they pant expectantly. Yeah, that was about it. She was obviously trying to follow the story. But she was waiting for me to throw the ball. Sorry, lady, that’s all I got. Ball’s been thrown. “Aw, hell, forget it,” I thought. “I’ll just wait til I can post it and my bloggy Mama buddies will totally get it.”

Have I told you lately that I adore you? Because you GET IT.

In the mean time, Julie sure got it.

And as for Miss Kendall, well I don’t have to tell you, do I?