the conversation revisited

Just before bed last night, I exchanged texts with a friend who has a son Brooke’s age who is on the spectrum. I’ve met her in person once. She was telling me that she had taken her son to see Dolphin Tale and was trying to convince me that I needed to go see it too.

Nice try, I told her, but this Mama does not need help initiating a good cry. She pushed; I resisted; we laughed. She told me that her son had sat through the entire two hours of the movie – something we all know can be an incredible challenge for our kiddos. So far, Brooke has done that exactly once.

But her bigger news was yet to come. The rest of the conversation went like this:

K made a friend.

What???? That’s AWESOME!

Yup. Kid just like him. Row behind us.

That.

Is.

Awesome.

Mom seemed sad and lost. God. I know that look. We exchanged numbers. She needs a village.

That’s even more awesome. You’ll be her village.

Huge.

And with that, a connection was made. A mom who was feeling alone will soon find out just how many of us are out here, walking this path together. And if her journey is anything like so many of ours, that knowledge will change her life.

This road is not easy. It’s isolating. It’s frightening. At times it’s unbearably sad. But so too, there are gifts to be found when we are able to share the moments of sweet victory with those who understand. When we can say, “My kid made it through a movie” or even better, “He found a friend” and someone on the other end of the line knows – truly KNOWS what that means, we are lifted.

By gathering together we have been able to affect change that we never could have alone. We’ve enacted laws to protect our children; we’ve fought discrimination at every level; we’ve changed the direction of scientific study; we’ve created programs to institutionalize inclusive practices in our schools and our churches and our communities, ending the practice of automatically institutionalizing our children. Together, we have made the world aware that our babies (yes, whether they are three or thirty they are our babies) are – in the words of the formidable Eustacia Cutler, “different, not less.”

Yes, this road is hard, but together, we move the obstacles as we go. And best of all, we know as we do that we have made the path easier for those who come along behind. And heaven knows, until we figure this damn thing out, they’re going to keep coming.

This community has meant everything to me. Without it, I would not have found my voice. Without it, I would not have written to the president, nor found myself headed to the White House to talk about our children. Without it, I would not wake up every morning knowing that I am not alone.

But this is not about me. Or Luau. Or my friend whose son sat through the movie. It’s not even about the other mom who was still wearing that damn cloak. It’s not about any of us. It’s about our kids. And they, far more than we, deserve THEIR village.

You think WE feel isolated? How about our kids?

I am terrified – abjectly terrified – about the future that Brooke faces as an adolescent, a teen, a young woman. I watch Katie struggle with all the typical drama of tween angst. I remember back to those days – feeling awkward and gawky, my body beginning to change in ways I didn’t really understand. I remember being teased for being as little as I was – I made a convenient arm rest for an obnoxious kid at recess. God, I hated the arm rest routine. And I think about that now. I think about how absurdly benign that was, relative to – well, THIS. But in my little world, it was something.

In Brooke’s world, it might be everything. These kids face an entirely different reality. They don’t fit the mold. They’re different. They’re odd. They say things that don’t make sense. They stand out at every turn. They are richly layered, incredible human beings who do. not. fit. in.

Enter the internet. In the wrong hands, a tool for bullying as persistent as the 24 hour news cycle. The kid who thought it was funny to use me as an arm rest at recess every day? Give that kid the anonymity of a screen and a keyboard and see where it goes. Give him some actual fodder – a kid who scripts movies at lunch, a boy who flaps his hands when he gets excited, a girl who hums in a nonstop verbal stim all day – and see what happens.

These kids will need to know, as they walk a path on which they do not see another soul, that they are not alone. That there are kids JUST LIKE THEM out there who walk similar paths every day. Kids who have felt the same way that they do. Teenagers who have found their niche. College students who, once out of high school blossomed. Adults who followed a different path – who found that what was once was called their obsessive interest is now referred to as their specialty – their passion. People who grew up feeling desperately different and found out that they are part of a community of people who did too.

I want that for my child. I want her to have a place to turn, a friend to text before bed. I want HER to say, “I sat through a two-hour movie!” and that friend to say, “Go you,; I know how hard that is. Why do they have to make the sound so damn loud? Ugh!” I want that simple recognition that means so much to me – for her.

I want her to advocate for herself if she’s able. I want HER to enact laws and fight discrimination. I want HER to change the direction of scientific study, to create BETTER programs to institutionalize inclusive practices in our schools and our churches and our communities, to put the final nails in the coffin of assumed institutionalization. I want HER to make the world aware that SHE – and so many like her – are different, but never, ever less. I want her to have a community that allows her to do all that – and so much more that I don’t have the imagination to conjure – if she so chooses. That’s an important detail of course – if she so chooses. But I want it to be a choice.

So we work every day to give her the tools to be able to make that choice. Language – above all she needs some kind of language, some means to communicate what she needs and wants and thinks and feels, who she is. An understanding of the things that elude her naturally – social construct, pragmatics, expectation, interaction, control. And community.

My girl will need her village.

And so, again last night, I tried. I danced around the conversation. The Autism Walk is this weekend. The word will be everywhere.

“Baby, do you know that we’re going to the Autism Walk on Sunday?”

“We are?”

“Yup, we are. And did you know that Grammy and Grandpa DD are coming too?”

“Hooray!”

“I thought you’d like that!”

“Is Drama coming too?”

“No, baby, Drama lives far away.”

“Is Miss M coming too?” (Miss M is Drama’s daughter)

“No, sweetie, Drama and Miss M live too far away to come.”

“Is Roxie coming too?” (Roxie is Drama’s other daughter)

“No, honey. Drama and Miss M and Roxie all live too far away.”

“They’re not coming.”

“That’s right, baby. We’ll see them a different time, OK?”

“OK”

“So honey, do you remember Mama telling you that you have autism?”

“Yeah.”

“Well, when we go to the autism walk this weekend there will be LOTS of other kids who have it too.”

“Is Drama coming too?”

She laughs. It’s a game now.

I tickle her as I say, “No, ya silly, Drama’s not coming too.”

She giggles. God, that sweet laugh could light a thousand suns.

I nuzzle into the top of her head and turn out the light.

We’ll talk about it again.

And again.

It will eventually make sense.

It will eventually lead her to HER village.

She breaks the comfortable silence.

“Knock Knock!”

“Who’s there?”

“Drama!”

Drama who?

“Is Drama coming too?”

Yes, we’ll eventually put the pieces together.

In the meantime, we’ve got some laughing to do.

Ed note:

To read more on this topic, please click HERE to visit our similar conversation last year. 

To support our Autism Walk please, please, please click HERE. 

To read Stephen Shore’s tip for disclosing an autism diagnosis to your chid, please click HERE.

weekend in pictures – part two, the firehouse

Ed note: for the back story, please click HERE.

OK, so where were we? I believe we left off yesterday having successfully doused the towering inferno – AKA the ‘Oh yeah, that’s right, in yo’ face, Doc’ cupcake as the apple pie and apple crisps finished baking.

The girls set off to make cards for the firefighters while I finished cleaning up.

Although this may seem like too small a detail to mention, I have to tell you what happened next. The girls went into the den together and they made cards. And I stayed in the kitchen and cleaned up. And for some reason I could not discern – perhaps the moon was in the seventh house? Jupiter aligned with Mars? (Anyone want to name the song?) No matter the reason, I’ll be damned if peace didn’t guide the planet (anyone?) because not once did I hear, “Mama, Brooke is yelling” or “Mama, she’s totally not listening” or “Mama, I need help!” from one or a pained “Nooooooooooooo!” from the other one.

Nope, not once. They sat. They drew. Love steered the stars. (C’mon now, I know you know this.)

Anyway, this was the result from the big one. (Front of Katie’s card …)

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Middle of Katie’s card … I love that she not only took the time to draw the water shooting out of the fire truck and onto the burning house, but that she felt it important to add the bright blue sky and sun. Hey, guys, if you’re going to have to go risk your lives to fight a fire, we here at the Diary house really hope it’s a gorgeous day.

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And this was the result from the little one …

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I know I’m her mom and I know I’m not remotely objective, but seriously, how awesome is that? THAT is five years of OT, my friends. And for the record, this was a child who would / could not HOLD a writing implement of any kind in pre-school. How about them apples?

And not for nothin’, but can we talk about what she wrote inside her card (below)?

Do you like fire fighting?

Now, for the uninitiated, let me tell you why this matters. It matters because of this – Theory of mind. OK, moving on.

Middle of Brooke’s card …

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So, cards and hot apple crisp in hand, we headed out. After a quick stop at Whole Foods for some eighteen carat gold ice cream (I just assumed because I can’t imagine why else they would have charged $9 for a quart of the stuff), we headed down to the local firehouse. When we got there, we wandered around for a while, completely confused. We opened doors, peeked around corners and even bumped into each other a couple of times. Had we carried on that way for long, I could have called the post The Keystone Cops visit the Firehouse.

Finally, we opened the right door and found the crew gathered around a large table. The moment was initially awkward, but hot apple crisp and a quart of gold-plated ice cream broke the ice pretty quickly. That and a couple of really cute kids. Does the trick every time.

Katie and I hung out at the door and chatted a bit with one of the guys. Brooke however, walked right in and began asking the firemen their names. One by one, she walked around the room, pointing at each of them so there would be no doubt who she was addressing when she said, “What’s your name?” “It’s nice to meet you, Mike. I’m Brooke.” Then the outstretched little finger would lead her to her next inquiry. “What’s YOUR name? “It’s nice to meet you, Joe. I’m Brooke.” And so on.

Katie tugged at my arm. It’s a tug I know well. It’s the ‘MAMA, she’s embarrassing me’ tug. I looked down and smiled at her. “She’s fine, baby,” I whispered. “She’s fine.” Truthfully, I thought she was doing a whole lot better than fine.

One of the guys asked if the girls would like to go see the trucks. Before I could so much as turn my head, they’d both shouted, “Yes, please!” so off we went.

The girls were in heaven as Fireman Mike showed them around. He let them hold/ touch/ push/ pull /try on nearly anything in which they expressed an interest.

So Brooke immediately jumped into these …

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She was very excited when Fireman Mike showed up with the necessary accessories to complete the outfit.

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Then it was time for a ride …

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This would probably be an opportune time to tell you why I welled up as I took the photo above.

You know those Touch-a-Truck events where local service groups and businesses bring their trucks to a big field and let the kids in town crawl all over them? Well, they sound great. Unless you have a kid for whom a field full of other kids screaming, laughing, crying, ringing bells, honking horns and setting off sirens may as well be the third ring of Hell. So this – well, this was big. My baby got to check out the fire trucks all by herself.

And her mama got to enjoy yet another of those HUGE tiny moments that we on this journey have the privilege of noticing. Moving on …

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Next it was big sister’s turn to drive …

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But that was just the engine. What about the ladder?

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You can see just how much Katie really hated all this, can’t you? She really looks miserable in this next one, don’t you think? …

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While Katie was driving the ladder, Brooke decided to suit up again and hop back into the engine. Ya know, just in case. Always good to be prepared. (Mike tried to explain that the hat was backwards, but she wasn’t goin for it.)

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As she climbed down from the truck, Brooke pointed a finger at Mike indicating that she had something to tell him. “We LOVE firefighters!” she yelled. Mike smiled. He wasn’t entirely sure what to make of her, but he was pretty sure he liked her. She then followed up with some very important information for him. “When you see smoke, you stay low and GO!”

MIke laughed. “That’s right. Wow, you’re better at this than I am! Thanks.”

I’m guessing he hasn’t seen this. Perhaps we should donate one to the department …

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Next it was Katie’s turn to suit up …

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As soon as she was in the get-up, Brooke came running at her and did this …

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Which was sweet, but made very little sense until a few minutes later when we were headed out.

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We thanked Mike profusely for his time. He thanked us for the apple crisp. And as we said our goodbyes, Brooke asked Katie a question. Loudly.

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“Hey, Katie, do you want to HUG firefighter Mike?”

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Katie looked at me. I looked at her. Neither of us looked at Mike. And Brooke asked again.

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“Katie, are you going to hug firefighter Mike?”

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Katie handled it as only Katie could. First she very nicely responded to her sister, “Hmm, I don’t think so Brooke.” And then stage whispered to Mike what everyone else was thinking. “Well, that was awkward.”

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I could barely contain myself.

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When we got outside, both girls still had smiles wrapped three times around their heads. I was about to ask them what their favorite moments had been, but Brooke had a question.

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“Hey, Katie. Did ya hug a firefighter?”

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Katie chuckled. “Um, no Brooke, I didn’t.”

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Brooke looked smug as she answered.

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“Well I did.”

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And suddenly it all made sense. Elmo. Elmo had hugged a firefighter. And now, in her own ingenious way, so had Brooke. That’s my kid.

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And that, my friends was our day at the firehouse. Thanks so much for coming along for the ride!

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***

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A HUGE shout out to our firemen – not just to the guys who showed my girls (and me!) such warmth and hospitality on Sunday, but to fire fighters everywhere who risk their lives every day to keep us safe. You are our heroes. If we could, we’d bring every single one of you a hot apple crisp and eighteen carat gold ice cream.

weekend in pictures – part one and a half

Fire house pictures are next; I promise. But I really, really wanted to share this next group of shots first. They may not look like much to the casual observer, but I know full well there ain’t a casual observer among us in this crowd, so I trust you’ll understand my enthusiasm.

While the various apple pastries were baking and I was cleaning up the detritus of the process, Brooke came into the kitchen and made an announcement.

“It’s time for Happy Mother’s Day!” she declared.

I told her that sounded great and turned back to the sink. She went to work preparing.

I was half-aware as she reached up onto the counter and took a cupcake from the tin. I was only sort of paying attention as she rooted around in the drawer where we keep the birthday candles. But she certainly had me rapt when she handed me the lighter and said, “You will light them so we can sing.”

Apparently, we were not messing around.

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And so, of course we lit them.

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And Brooke and I sang a rousing rendition of “Happy Mother’s Day to you (me)!”

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But since we really wanted to go visit these guys instead of having them visit us ..

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We not only blew out the candles immediately, but doused the smoldering remains of the inferno with water just to be sure.

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So why does this all matter so much? Well, any chance you remember me telling you about that first evaluation with the Doctor Who Apparently Got A Crystal Ball with her Harvard Degree ? If not, I’d ask you to click onto the words in blue and read the post, then come on back. Take your time. I’m happy to wait. It’s worth it, because it will make this next part a whole lot sweeter.

You see, a big part of the premise for the Doctor Who Apparently Got A Crystal Ball Along With Her Harvard Degree’s assessment was the fact that Brooke had failed pretty spectacularly in the pretend play and joint attention portions of the evaluation. When presented with a birthday party play scheme, if I recall correctly she banged the plastic cake against the plastic plate. She didn’t respond at all to the doctor’s prompts to ‘light the candles’ or to ‘sing Happy Birthday’. She didn’t blow out the pretend flame nor did she seem to have the slightest interest in nor understanding of why anyone would want to pretend to eat the pretend cake.

So there were quotes. There were words like these:

“Child presents with a marked lack of joint attention. There is no attempt to share enjoyment or engage with others. “

and these:

“Child has no discernible play skills.”

And now?

Well, now there’s a kid who comes into the kitchen to engage her Mama in the shared enjoyment of a play scheme born entirely of her own imagination.

And there’s a mom who once again sends up a silent prayer that somewhere there’s a doctor with a defunct crystal ball who can hear her saying, “Oh yeah, whatdaythink now, doc?”

weekend in pictures – part one

On Saturday, I was determined to do something fun with the girls in Daddy’s absence. The day was hot, sticky and overcast and the skies were threatening to open at any moment. Which I realized, in our world, was perfect.

The normally packed-to-the-gills orchard would be more or less empty. Because, well, who wants to go walk around an orchard when the weather pretty much sucks? Yup. We do. And it worked. It allowed us a day that we never could have had otherwise. No lines, no crowds, no crazy waits to park or ride the train. Oh, and no petting zoo. The one that Brooke was really, really, really excited for. Apparently, there weren’t enough people to bother opening it and well, OK that part really kind of sucked, but hey, the rest was pretty much awesome.

First there was a ride on this …

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(Which looked like this) …

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And brought us to this …

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Then there were rides on these … (Notice Katie in the background chatting up the ponies’ handler. Yeah, that’s my kid.)

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And then a ride on this …

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Then there was some peekin out of here ..

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Followed by some sliding down here …

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Then there was a little of this … (gotta love the too-cool-for-school hat offset by the gatorade mustache. tweendom, ain’t it grand?)

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And, um, this …

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Then, for the sake of honest reporting, I will tell you that the slide was followed by a disastrous trip to the bouncy house. Brooke was completely derailed for a while and even Katie was pretty rattled. I wondered if our day was shot to hell then and there, which would have been a shame as we hadn’t picked a single piece of fruit yet, but thankfully we managed to get it back on track. During this delightful half hour or so (not), my camera was in my pocket because, well, who takes pictures when the wheels are flying off the wagon, right? Right. But there you have it – the whole story. Ya know, pretty much. Moving on ..

Then it was back on this …

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So that we could finally do some of this …

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So that we could make one of these … (For the record, this looked way better in person. Seems I’m much more skilled at taking pictures of cute kids than food.)

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And a couple of these …

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To bring to the guys who wear these …

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To be continued …

Ed note: I would like to thank everyone who was instrumental in getting CARA – the Combating Autism Reauthorization Act passed in the Senate last night. I am so grateful for the dogged dedication of people like my friend Judith Ursitti and all of her colleagues at Autism Votes along with Senator Menendez for his leadership, my state’s Senators Kerry and Brown for their sponsorship and so many others who made this possible simply by refusing to give up on our kids. I would like to particularly thank Senator Kerry, his State Director, Drew O’Brien and all of their staff members for their commitment to our community. Their support has been invaluable.

truthish

Happy Monday, friends. I hope you all had a good weekend.

Here at the Diary house we had a pretty spectacular weekend, despite the fact that we were down one Daddy for most of it.

Luau spent most of Saturday and all of Sunday up in Vermont running his first Ultramarathon. I have no idea what to say about the fact that my husband ran fifty miles in just over eleven hours yesterday. Yes, fifty miles STRAIGHT – in one day. All I can say is that he did it and so he now has a medal that, as far as I’m concerned, proves beyond a shadow of a doubt that he is certifiable.

Anyway, the girls and I missed him, but we made the best of our time without him. We spent Saturday at an orchard, picking apples and peaches, jumping off hay bales, sloshing through a muddy burlap maze and but for a few glaring exceptions, having ourselves a grand old time.

On Sunday, thanks to my older daughter’s huge heart, we found ourselves at our local firehouse. That story is probably best told by Diary’s Facebook status yesterday morning:

peeled the damn apples. cored the damn apples. made the damn apple pie. had too many damn apples left over. made apple crisp. still had damn apples left over. was cursing said damn apples. katie said, ‘um, mama, maybe we could make another crisp and bring it to the firehouse to thank the firefighters for keeping us safe.’ second apple crisp going into oven now. girls making cards for firefighters. not cursing apples anymore.

My kid never ceases to amaze me. So we went to the firehouse, freshly baked crisp in one hand and some freshly bought vanilla ice cream in the other. I’m sure we can all agree that warm apple crisp without vanilla ice cream is just wrong, no?

The firemen were absolutely wonderful. One of them insisted on bringing the girls out to see the firetrucks. While I was eager to get us out of his hair, he was in no hurry at all and my girls? Well, they were in heaven.

But I’m stopping there, cause I took a million pictures and they tell it all, and well, I mentioned that Luau was away this weekend right? So have we talked about the fact that I am desperately, completely IT challenged? As in I have no idea if I need to upload the pictures or download them and I’m pretty sure that even if I knew what to call it I wouldn’t have the foggiest idea where to begin to actually do it. So, um, once my IT department is back up and running this morning (probably a poor choice of words, sorry, hun) and the pictures are well, loaded, I’ll get back to the story.

In the meantime, I thought I’d share the following. It’s one of my favorite recent stories for a million reasons. It shows how even with limited language or understanding of the relevant social construct, my child finds a way to get what she wants. It shows the patience and power of sister love. It shows the way my girl’s wondrous brain works and how she so often uses it to communicate. And well, a whole lot more. So here goes.

**

When the Drama clan visited this summer, all the girls gathered in Katie’s room and played a good old-fashioned round of Truth or Dare. I’m told that Little Miss ‘kinda played too.’

She apparently got the gist of the game, though it seems that some of the finer details might have been lost in translation. So when she sparked up a game with her sister the other day, it went like this:

“Hey, Katie, turthish or darey?”

“Brooke, you can’t just say ‘truth or dare,’ you have to ask me first if I want to play it with you.”

“Hey, Katie, want to play Truth or Dare?”

“Sure, Brooke.”

“Hey, Katie, truthish or darey?”

“Um, I’ll take truth.”

“OK. I dare you to jump really high.”

“No, Brooke, I picked TRUTH, not dare.”

“OK, Katie. Katie, I truth you to jump really high.”

“Silly. If I pick truth that means that you have to ASK me a question, OK?”

“OK.”

(short pause)

“Hey, Katie, can ya show me how you jump really high?

*

I.

Love.

My.

Kid(s).

See you tomorrow, my friends. I hope today is the beginning of a wonderful week.

comparison

Katie, September 2008

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When I first approached Luau with concerns about Brooke’s development nearly five and a half years ago, he dismissed them. Back then my argument was based largely on a comparison of her developmental trajectory to her sister’s.

“Hon,” he said numerous times, “you can’t compare her to Katie. Katie is an incredibly precocious kid. She always has been. So to say, ‘But Katie did such and such at this age and Brooke’s not doing that yet’ – well, it’s just not reasonable to expect that she – or any other kid – would.”

As wrong as he may have been to dismiss my concerns about Brooke, he was also absolutely right. Comparing my children – developmentally or otherwise – was and remains a useless exercise.

On the Ralph Lauren shoot earlier this week, we saw crew members that we hadn’t seen in years. We reminisced about the weeklong shoot in the Adirondacks, scratching our heads at how fast the time has flown since. It came up time and again and I found myself retracing our steps through the mountains three years ago, remembering.

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I remembered the ride. The chatting, the singing, Katie reading aloud. I remembered stopping in Saratoga for the night and telling the clerk at the inn that even though their policy was 16 years and over, he needn’t worry; my girl was very grown-up.

I remembered the restaurants – eating with the other kids and their moms – then hanging out at the table to enjoy each other’s company long after dinner had ended. I remembered her holding court with the kids, showing them a trick she’d learned from her dad.

I remembered her ease with the adults – how much she loved to be around them. I remembered her stepping in to calm one of the littler kids who was crying on set. I remembered the kids’ wrangler turning to me in awe when she did, telling me no one had been able to get her to settle down. I remembered her turning to Katie to ask if she wanted her job.

I remembered our shopping expedition in Lake Placid and the oh-so-cool crocheted beanie hat that she just HAD to have. I remembered the bead shop where we made jewelry – for her, for me, for the crew, for her sister.

I remembered her calling Daddy and talking and talking and talking. Ooh, Daddy! It’s soooooo awesome here! I wish you could see it. We so have to come back here together sometime.

I remembered listening ad nauseam to the same two CDs in the car – of all things Neil Diamond and Annie because we’d forgotten to grab the rest. I remembered inventing games when we were bored – creating stories together by alternating lines, then words – laughing at what we came up with.

I remembered pulling over when we saw a stuffed moose on the side of the road because Katie HAD to check it out, then walking through the taxidermy shop, giggling as we fought a case of the creeps and laughing with relief when we finally walked out.

Above all, I remembered the ease and the delicious feeling that I was traveling with a friend.

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On the way home on Wednesday afternoon, as we raced to catch the ferry from Orient Point to New London, it hit me. The thought careened into the car at a hundred miles an hour. That trip – that very first trip with Katie – was almost exactly three years ago. Memories twisted and cracked. Splintered shards of where we are now flew through the air.

As fast as the thought had come, I processed its implications in painfully slow motion.

Katie … is … two … years … older … than … her … sister. Three … years … ago … Katie … was … seven. Wait … That … can’t … be … right … No … no … it … was … three … years … ago … OK … yes … three … years … ago … So … she … was … seven.

Holy crap.

Katie was a full YEAR younger then than Brooke is NOW.

The wreckage began to smolder. The putrid smoke rose around me and filled the car. Comparison – useless, toxic comparison – hung limp overhead. I refused to give it air – all these years I’ve refused – and yet, there it was.

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Three and a half hours later, we ran in through the garage door and bolted up the stairs in search of Luau and Brooke. I found them in the bathroom where Brooke was happily gathering bubbles in the tub. I ran to her, kissed her wet head and told her how much I loved her – how much I’d missed her.

“Hi, Mom,” she said, “the Godspell workers are going to the beach. They’ll need their bathing suits of the one pieces. Can you tell me that?”

I knelt by the side of the tub and launched into our routine. It’s what we do. It’s what she needs. It’s how we connect.

Later that night, someone tapped me on the shoulder. I knew I shouldn’t turn around. I knew, damn it. But there it was. In my house. The cloud of toxic smoke.

Katie was seven then.

Brooke is eight now.

There is no point in comparison. There never has been. There never will be. They are different children, different people, developing radically differently.

Autism or no, they are simply not meant to be compared.

No, I will not give it air.

the next right thing

*

A fellow mom asked for my help the other day. She was overwhelmed and needed someone to tell her she was going to get through the place she was in.

I’m a pretty good person to go to when you’re in the Land of Overwhelm. I know that place like the back of my hand. I used to give tours, but well, they got overwhelming. But as a frequent visitor, I get it. Like I really, really get it.

So I offered this mom the words that have been offered to me over the years. The words that have served as a bridge from the land of Overwhelm to the land of Action. In part they come from my friend Emily, one of the dearest souls I’ve never met. In part they come (indirectly) from Luau’s mom. In part they come from my dad. And in large part they simply come from knowing what it means to feel paralyzed.

I’m not sure that the mom that I sent them to ever saw them. If she’s reading this, I sincerely hope she’ll check her Facebook messages so that she can see the note in its entirety. But in the meantime, I thought that perhaps she wasn’t the only one feeling like it’s just too much. Wondering how the hell she’s going to get up and face this all again today. And tomorrow.

So I share my response to her here. From someone who gets it.

*

You will do it my dear. You will just like we all do – one baby step at a time. One ‘next right thing’ at a time. Even if the ‘next right thing’ on some days is brushing your teeth.

When the mountain is overwhelming, I look not to the peak but to my feet. When I look up, I get paralyzed. When I set my focus instead on the mechanics of each individual step, I can keep moving.

And I say it to myself over and over. Just do the ‘next right thing.’

The prospect of a (second) diagnosis is terrifying, I know. But if it comes, it will bring with it knowledge, understanding, access – the lanterns that light the path forward.

I know you feel alone, but there is help out there, where you are. The Autism Society of [removed]* has chapters all over your state. There is a listing of local chapters here: [removed]*

Call them. They will be able to help. They have tons of resources and can help connect you with the services and support that you need. That’s what they’re there for.

It’s the next right thing.

Hang in there, lady. You can do this. I promise.

J

*

*There are a number of places to find resources right where YOU are. While they don’t exist everywhere, there are more and more LOCAL advocacy groups popping up all the time. Google “(nearest city) autism resources” and see what comes up. If you come up dry, there are many national organizations that can offer assistance and may be able to connect you locally. Some are listed below. Feel free to add yours in the comments. And remember, if there isn’t anything near you yet, you can always create a group of your own.

Autism Speaks

Autism Society of America

National Autism Association

The Arc

CARA – The Combating Autism Reauthorization Act

Yesterday, after introduction by the Republican majority, the House of Representatives approved HR 2005, the Combating Autism Reauthorization Act. The act was approved by Unanimous Consent.

The moment would have been cause for celebration, but the vote brought little relief to this community. Because in the Senate politics were, once again, taking center stage. Now, we watch from the cheap seats as politicians play a game of chicken with our children’s lives.

The following is my best attempt to transcribe Senator Menendez’s (D-NJ) remarks yesterday from the Senate floor regarding S.1094. (Click the link to see the video, which continues to include the objections from Senators DeMint and Coburn)

This legislation was reported out of the Health, Education, Labor and Pensions Committee on September 7th without amendment and with unanimous support – Republicans and Democrats together. This result – the result of a bipartisan effort with Senator Enzi, who is the ranking member of the Health and Education, Labor Committee is vital to ensuring that the programs created on the landmark Combatting Autism Act of 2006 continue. That bill was signed into law by President George W. Bush after passing the Senate on a Unanimous Consent.

This long history of bipartisan support only adds to my confusion as to why there are colleagues on the other side of the aisle who are currently preventing the bill from passing. This legislation has unanimous support from Democrats and strong bipartisan support throughout the Senate, including nine Republican co-sponsors.

Without Senate approval, the Combating Autism Act will sunset at the end of next week, leaving countless families across our nation without the support they need in caring for their children with autism.**

This bill provides an additional three years of guarantees in terms of simply in the context of an authorization – obviously appropriation processes would have to go through the process and there would have to be debating and voting on the floor. But that authorization for three years at FY11 appropriated levels for the programs at the Center for Disease Control and Prevention, the National Institutes of Health and the Health, Resources and Services Administration are vital to continuing our efforts on diagnosing Autism Spectrum Disorder, advancing behavioral therapies to improve social abilities for those with autism, providing families with education and support services to better understand autism and to coordinating federal efforts on researching autism.

Now I’ve worked closely with Senator Enzi who has been a co-champion in this regard on this legislation to address all concerns. Since it cleared the Health, Education and Labor Committee with full bipartisan and unanimous support I thought we’d succeeded in addressing those concerns. I have not been approached or heard a single objection from any Republican as to why they might hold this bill and I have been open in my willingness to work with the other side in addressing their concerns with the bills policy.

Having not heard a single objection to the merits of this legislation – which, by the way, the exact replica is being offered by the Republican majority in the House* – I have to assume that this is for reasons other than policy. We’ve had a week to have the opportunity to bring this forward – it has caused incredible uncertainty and unnecessary worry for the parents of children with autism as they wait anxiously to learn if the government is going to continue to reauthorize the very essence of the programs that have helped their children be able to fulfill their God given potential to the maximum ability that they can.

I have met family after family for which this legislation has made an enormous difference in their lives. And I don’t understand any reason – considering all the work that has been done, considering the bipartisan support, considering that the House Republican majority is offering the same legislation – why we have been unable to pursue this.

So therefore Mr President, I ask Unanimous Consent of the Senate to proceed to the consideration of calendar #163 S 1094 The Combatting Autism Reauthorization Act that the bill be read a third time and pass the motion reconsidered be laid upon the table with no intervening action or debate.

Is there objection?

“Mr President, on behalf of myself and several colleagues, I object.” – Senator DeMint (R-SC)

*

Senator DeMint went on to say, “The lobby to support autism is definitely very strong and we appreciate that. But there are many, many diseases that children and people throughout our country face.”

While I understand the Senator’s concerns about ‘disease’-specific funding, I’d ask him to consider the following***.

• More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
• Autism is the fastest-growing serious developmental disability in the U.S.
• Autism costs the nation over $35 billion per year, a figure expected to significantly increase in the next decade
• Autism receives approximately 5% of the government research funding of many less prevalent childhood diseases

This is not a typical 'disease', Senator. In fact, it's not a disease at all. It's triage. 
.
Senator DeMint was joined in objection by his colleague, Senator Coburn (R-OK). Senator Coburn apparently wanted us all to know that he really 'gets' autism. To that end he said the following in his remarks. "As an obstetrician and pediatrician I've diagnosed [autism], I've treated it, I've set with the families as they've suffered through the consequences of this disease." 

With all due respect to the Senator, I thank God he was neither my obstetrician nor my daughter’s pediatrician on many levels, but today I thank God more specifically that the doctors who do care for my family at the very least know that Autism is not a disease, but a neurological disorder. I dare not ask how he believes that he ‘treated’ autism.

*

I don’t know about you, but I’ve had far more than my fill of political brinksmanship on any topic. I cannot stomach the eleventh hour objections, the breathless negotiations, the reckless need for panicked stakeholders. Our children – and our nation – deserve better.

It takes thirty seconds to write to your Senators and tell them why this matters so much. I swear – it’s all set up for you. Thirty seconds, truly. It takes thirty more to share the info with everyone you know on Facebook and Twitter. Please, help us help our children. If not out of compassion, then for simple dollars and cents. Because we either provide services now or we support an entire generation of adults who have no prayer of living independently.

I’d say the choice is pretty clear, no matter which side of the aisle you may sit on.

CLICK HERE TO TAKE ACTION

*

* The House went on to pass their identical bill

** Emphasis mine

*** Statistics culled from various sources, cited here

when lightening strikes twice

*

September, 2008

http://adiaryofamom.wordpress.com/2008/09/08/work-it-girl/

(please click on the link above to read the story)

*

May, 2009

http://adiaryofamom.wordpress.com/2009/05/18/what-i-learned-on-a-photo-shoot-w-katie/

(please click on the link above to the read the story)

*

September, 2011

Dinner on the road

(story below)

*

Hi Jess,

I hope all is well.  I’m producing the next Ralph Lauren kids shoot and we wanted to know if Katie was available to be in it! We’re shooting in (removed) Sept. 20^th & 21^st.  

Please let me know if she’s available.

Thank you!

Best regards,

(removed)

Director of Photography Production

Ralph Lauren Advertising

*

Once again, the call came at the worst possible time, and once again, it was also the best.

Katie and I headed for the road when I got home from work yesterday. We turned the music up when we hit the highway and we belted out our favorite songs. We turned the music off when she asked if we could talk. And talk we did. A lot. She cried a little. We laughed a lot. We turned the music back on and sang some more.

We stopped in an old fishing town for dinner and spent the night at a lovely little inn on the river. This morning, we will finish our drive. When we arrive on location this afternoon, we will find ourselves smack in the middle of a world that bears very little resemblance to the one we inhabit day-to-day. A world of fashion. A world of beauty and whimsy. A world of creativity. A world of fun.

A world that Katie doesn’t have to share with anyone.

A world that – for two precious days – is all about HER.

Thank you, Ralph Lauren, from the bottom of my heart. As big a gift as this would be for many, it’s enormous to this one.

*

we both know i’m lying

Survivor, survivor’s, or survivors guilt or syndrome is a mental condition … It may be found among survivors of combat, natural disasters, epidemics, among the friends and family of those who have committed suicide, and in non-mortal situations such as among those whose colleagues are laid off.

The experience and manifestation of survivor’s guilt will depend on an individual’s psychological profile. When the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV) was published, survivor guilt was removed as a recognized specific diagnosis, and redefined as a significant symptom of post traumatic stress disorder (PTSD).

~ Excerpted from the definition of Survivor’s Guilt, Wikipedia

*

“I just have to respond to this ONE e-mail,” I say, “and then I’m done for now; I swear.”

Luau rolls his eyes.

I want to tell him I mean it, but ultimately we both know I’m lying.

Because the e-mails will keep coming. And with them the questions, the pleas, the requests to speak, to meet, to talk, to find, to ask, to connect. The ones from people who simply need to hear that someone somewhere understands. The ones that say I’m sorry, but I don’t know where else to turn.

I will respond to every one of them in some way – whatever way I can.

I will give them each something. Information, connection, direction. At the very least, an ear.

I have to.

.

I have to because I wake up every morning aware that my daughter was grazed by the same bullet that hit so many others square between the eyes.

Because my daughter has words. For the love of God, my daughter has words.

Because so many – so, so many – don’t.

Because Brooke is small for her age. Because people guess she’s five or six rather than the reality of her nearly eight and a half years. And because that buys her – and us – a wide cushion in strangers’ expectations.

Because so many don’t have that odd luxury.

Because she is not prone to wandering. And because when she does go too far, she can (now) answer to her name – or at the very least say, Here I am, when we yell, “Brooke, say, Here I am.”

Because so many can not.

Because we are not in the military. Because we don’t live with the fear that comes with a parent – a partner – at war. Because one of us isn’t at home trying to hold a family together – fighting a completely different kind of war every day. Because we don’t have to move every two years, starting over – always starting over – because the military says we must. Because our insurance covers at least some of what Brooke needs and we have access to the people who can provide it.

Because so many who serve our country do not have and cannot get what they need for their children.

Because we live in a time and a place where no physician would have the audacity to imply that I caused my daughter’s autism. That I – her mother – must have been cold, detached, that somehow I must not have loved her enough.

Because mothers who came before us were told it was all their fault.

Because we live at a time when no one would have dared to tell me to send my child away when her challenges began to emerge – to forget her, to erase her from our lives – because she was different.

Because so many before us believed they had no choice.

Because we live in a place where schools have Trees of Kindness, where parents before us have found one another, joined together and created advocacy groups, thereby leaving those of us who came next a clearer path to follow. Where there are inclusion specialists on staff, where social pragmatic groups are facilitated by specially trained SLPs, where BCBAs come to observe and consult with paras who get it – who really get it, where there are classroom teachers and PE teachers and custodians, art teachers and receptionists who truly care about my daughter.

Because schools like ours, while far from perfect, are a dream for far too many.

Because English is our first language, we know our legal rights and we can navigate the system.

Because sadly, even in schools like ours, those things make a difference.

Because although it’s not easy, we can afford the extras – the uncovered speech therapy sessions, the special needs drama classes, the gold-plated neuropsych, the play therapy, the one to one ABA parent training – etc, etc, etc …

Because so many simply can’t.

Because for the most part, the people in our lives either get it or want to. Because my parents read my blog and leave loving, supportive comments nearly every day.

Because so many are hung out to dry by families who refuse to try.

Because I have a group of Mama sister friends who walk this path along with me, who are always, ALWAYS there – to celebrate, to commiserate, to gently bitch-slap, to validate, to love, to simply say, ‘me too.’

Because so many feel like they walk this road alone.

Because I have a husband who stays strong when I fall apart. Who does the heavy lifting while I run around and tilt at windmills. Who makes dinner and does the dishes afterward. Who may roll his eyes, but who never says, ‘Don’t.’

Because so many parents are doing this – or feel like they’re doing this – without a partner.

Because I have YOU. You who take the time to read what I write here, who hold my babies in your hearts and remind me, day in and day out that we are in this together.

Because that is so incredibly precious.

Because when I really look at my life – and Brooke’s life and Katie’s life and our family’s life – what I see is an embarrassment of riches. And I wake up every morning feeling like I need to DO something to earn them.

.

So I tell Luau that I just have to respond to this ONE last e-mail and then I’ll be done.

And we both know I’m lying.

.

Ed note: Please click on the links (in blue) to read more about each topic.