warrior mom

Ed note: Please note, the following is NOT meant to be in any way, shape nor form an attack on those who choose to pursue biomedical interventions for themselves or their children. I realize that the term ‘Warrior Mom’ has taken on that connotation, and I want to be clear that it is NOT the one upon which this post is based.

I have a confession.

I’m not a warrior mom.

The term doesn’t fit. Never has.

I’ve never used it to describe myself, but time and again it’s been assigned to me.

I’m not comfortable with it.

It’s not who I am.

I am not at war.

Not with society, not with the glaring lady at the supermarket nor the neighbor who thinks my child just needs a swift kick in the ass. Not with big pharma nor doctors nor researchers. Not with the government, autism advocacy groups nor clean vaccine advocates. Not with those who seek a cure for autism nor those who find the word and all that it represents abhorrent. Not with the school district, the administrators who hold the purse strings nor the team who comes together to serve my child.

And I’m not at war with autism.

Warrior Mother – I understand the term. I know for others it fits like a glove. And that’s great if it works for them, fuels them, enables them to get up in the morning and start again. It’s necessary.

But it doesn’t fit for me.

Because for me, war means talking is over. War means anger. War means destruction. War means collateral damage.

For me, when talking stops, so does any hope of progress. When talking stops, so does any hope of building true awareness – not puzzle piece recognition as awareness, but awareness of how my child experiences the world and how we as a society can help ease the challenges she, and so many like her, face. When talking stops so does any hope of figuring out how to harness the potential – my God the potential! – of the 1.5 million people in this country living on the spectrum. When talking stops so does any hope of finding a place for those who may need the most support, but may well offer the most in return.

When talking stops so does any hope of creating a world defined by understanding and compassion. When talking stops so does any chance of making the woman at the supermarket look beyond what she thinks she sees or making the neighbor understand why my child behaves the way she does and that a swift kick in the ass is the last thing she needs.

When talking stops so does any chance of creating partnerships with companies who have the resources and facilities and minds to help. When talking stops so does any prayer of getting politicians to prioritize the needs of this community – even if we disagree at any given time what those needs may be. When talking stops there is no chance of creating an understanding of why the needs of this community can be not only disparate but at times contradictory. When talking stops so does any prayer of figuring out what we can do to represent not just those in the middle, but those at the extremes.

When talking stops it takes with it any chance of getting help. One doesn’t reach out to a hand holding a weapon.

When talking stops, we really are at war.

War means anger. Some revel in the anger – for them it is a source of energy. For me, it is an energy drain. It’s sucks the life out of me. Or at least the kind of life I want for my family.

War means destruction. Some would argue that we have been airlifted into this battlefield whether we chose to be or not. Some would argue that the destruction is already in progress and it’s up to us to stop it. It’s fight or lose everything. And I understand that. I do. It’s just not the way I choose to – the way I am able to – frame a life.

War means collateral damage. Autistic teens and adults fighting depression, addiction, low self-esteem and far worse because they have been told for years upon years that this heretofore inextricable part of who they are – the filter through which they experience the world – is an entity that we must fight at all costs.

But what are the costs to them? To my daughter as she comes of age and hears that autism is a mythical beast of epic proportions, single-handedly responsible for the downfall of a generation? What then?

There is nothing on God’s green earth that I wouldn’t do for my girl. But I don’t think that makes me a warrior. I think it makes me a mom.

For me, being a mom means digging deep to find finesse when I want to swing a bat. It means talking when I want to scream. It means painstakingly building connections – some days one at a time – when I want to curl up in a ball and call it a day. It means getting my ass up at 4:30 in the morning to write when I am desperate for sleep. It means sticking around to make organizations better when all I want to do is walk away. It means engaging politicians in meaningful dialogue when I want to tell them that I’m pretty sure the only reason that congress has an 11% approval rating is because their parents must have been included in the polls. It means continuing to talk to the White House, even when it feels like we’re getting nowhere. It means searching my soul to find common ground with those whose views are seemingly contradictory to mine. It means helping my girl to be everything she can be – everything she wants to be.

I have a confession.

I am not a warrior mom.

not wrong

Gratuitous picture of my girl that has nothing to do with the post you’re about to read

-

Brooke and I are cuddled in her bed. It’s getting late and at least one of us is nodding off. I’s time for me to go.

“OK, baby,” I ask, “who’s picking the number?”

“You would do it,” she says.

“OK,” I say, stroking her hair absent-mindedly. “Let’s do twelve.”

“And one for good luck,” she adds.

I smile in the darkness.

“Of course.”

-

We-ve been doing this is one form or another since she was five. Since the day that she asked me, “In how many you go?” and held up her little hand, fingers splayed and asked, “Do you go in five?”

Over the years, we’ve toyed with the ritual. We’ve giggled over numbers like 17,436,812 – “Too big!” and made up numbers like a hundred million million quillion – “Way too big!” We’ve played ‘Too long” and “Too short”. She’s counted and I’ve counted. We’ve counted together. We’ve counted up and (particularly when we were working on early subtraction) we’ve counted down.

One night, we had decided that it was a count together kind of night. But Brooke didn’t seem to be counting. When I reached fourteen, apparently alone, I asked her what happened. “I thought we were counting together,” I said. “I did it,” was her only response. I left it alone.

The pattern persisted. She agreed to count together. I counted alone. She said we HAD counted together.

I knew I was missing something.

-

So many times we get frustrated with our kids. A teacher says they’re not listening or ‘paying attention’ because their eyes are elsewhere and their bodies remain in perpetual motion. My girl listens best when she’s moving – it eliminates the need for the supreme effort that it costs to keep her body still and leaves her the energy to focus – even though focused is the last thing you might think you see when you look at her.

We get angry because it seems our kids aren’t listening, when really, they’ve taken in every last word – along with every click, tick, hum of the lights and sigh of the radiator all at the same time. But because they’re not making eye contact, we assume they’re not listening. It takes a long time for adults to re-learn that eyes are not ears.

We ask for a response and get frustrated when we think we don’t get one. “Honey,” we say, “I asked you a question.” But perhaps the response came, it just didn’t come where we were looking for it to land.

I knew I was missing something.

-

One night, I asked her to start counting without me. I promised to follow. Then I laid perfectly still and listened.

And there it was – a faint scratching sound on the comforter.

She was scratching out the numbers with her fingernails.

Two more nights and I was sure.

“Baby, did you scratch out the numbers on the blanket?”

“I did.”

Over time, the scratching turned into rubbing and the rubbing turned into tapping.

One day I asked if I could tap the numbers too.

Now, every night, we choose a number, she grabs my hand and says, ‘We would do the tappies.” And we do. Together. Nothing makes me happier.

-

The world demands that we interact with it in its own language. A language that Brooke does not instinctively speak. Day in and day out, she must find a way to function within it. To translate nearly every thought and feeling and impulse and mode of communication into something else – something ‘expected’ and ‘acceptable’ and ‘intelligible’ to everyone around her.

I am so grateful for the moments when none of those machinations are necessary – the fleeting instants in which I can, in my own way, tell her that I get it. That there’s someone in this world with whom she can speak her own language and be understood. I wish I could do so much more of it than I currently can. It is a gift to both of us.

I had an e-mail exchange about disclosure yesterday with a young woman on the spectrum who I greatly respect. In her e-mail she said, “The only time I’ve ever not felt disabled and wrong is when I’m with other Autistic people.”

I want so desperately for my girl to have access to others who speak her language instinctively – who have shared her experiences and who are able to understand her from the inside out. She deserves nothing less. But so too, I shudder at the thought of that being the only time and place that she ‘doesn’t feel wrong.’

As I went to bed last night, I thought of her words. And they haunted me. Home, I thought. Home is the place that my daughter – or anyone’s son or daughter, child or adult – should feel ‘not disabled’ and God-forbid, not ‘wrong.’

I had trouble falling asleep. And then I thought of the tappies. And as I pictured my girl and me, hand over hand, tapping out the numbers in her language, I hoped that in some small way, I might be showing her that she’s not the least bit wrong.

-

they met in the desert

* originally published Dec, 2008

-

They met in the desert and continued on their journey together –  From far away lands, they spoke different languages, had different customs, carried different gifts. But they shared one thing – an unshakable belief that a child would change the world.

To all of the incredibly wise men and women that I have met since this journey began -

I cherish our new-found friendship. I have learned so much from each and every one of you. I have been carried to new heights by your love, your support, your understanding. These have been the greatest of gifts.

My heart is full. Not just with the joys of the season, but with the knowledge that we will continue on our journey together.

Wishing you and yours a Very Merry Christmas.

 

the oinker sisters and the teletubbies – a christmas story

*

“Yes,” I said. “The trio of singing pigs from Sesame Street. They’re called the Oinker Sisters”

“Hmm, I don’t think I know them,” she said. “But I’ll figure it out. Can you send a picture?”

Of course she didn’t know them. Who on God’s green earth would know them? But they were one of only two things that my girl wanted for Christmas and damn it, she was (is) going to get them.

I am the mother of an autistic child. At different times, that means very different things. At holiday times, it means that I have a costume designer on speed dial.

You see, my girl has a history with this sort of thing. From the birthday that she asked for the Fire-Chicken-Boots …

… to the Christmas that she had to have (Victor Garber as) Jesus from Godspell …

Clearly that picture was taken a long time ago. Poor guy now has dreads.

Or the next one when she asked for Mary Magdalene …

Apparently Jesus was lonely.

*

These are not gifts that one can buy on Amazon, my friends. There are no Black Friday specials on Godspell plush dolls and last I checked Walmart wasn’t running a Door Busting Sale on obscure Sesame Street characters that 99.9% of kids can’t name.

There is eBay. And thank God for Ebay. Without eBay I never would have found the Prairie Dawn doll that she had to have two years ago ..

or her sister Betty Lou, who joined the crew last year …

And heaven knows where I would have found the Teletubbies that she asked for from Grammy …

Who knew the trippy little dudes were still available in China? Hooray!

But even eBay can’t help me find these lovely ladies …

Yup, the Oinker Sisters

But no matter, Santa will not disappoint. Super K the costumer is on it.

I understand that to some it may sound absurdly overindulgent to commission a professional costume designer to make a stuffed animal for a child. I understand that many of those same people may also think it somewhat inappropriate to be buying Sesame Street characters and Teletubbies for a nearly nine year-old girl.

If you are among them, please feel free.

But I remember, you see. I remember the days when for the life of me I couldn’t tell whether or not my daughter had the foggiest idea that it *was* Christmas. I remember staying as far away from Santa as we could. I remember escaping the room after opening a present or two, hiding in the stairway, rocking my overwhelmed girl. I remember Katie asking if we’d be back soon.

And I remember going through the motions year after year after year, asking her what she might like as a gift. I remember trying so hard to find the right words, to put them in the right order to make them accessible to her, to unlock the mystery.

I remember getting tantalizingly close -

“Hey Brooke, what do you think you might want to get as a present for Christmas this year?”

“I would get a present in a box.”

“Yes! And when you open it what would you like it to be?”

“I’ll open the box.”

“Yes, baby, and what do you want to be inside the box?”

“The present.”

And so I tried. I tried to find things that I thought would make her happy. I watched her. I studied her. I tried. Sometimes it worked. Other times, often spectacularly, it didn’t.

And then one year she asked.

Fire chicken Boots for her birthday.

Jesus for Christmas.

Mary Magdalene.

Prairie Dawn.

Betty Lou.

She asked and she asked and she asked.

So say what you will about age-appropriate toys or teaching my kid a lesson about not being able to get everything she wants for Christmas. You are, of course entitled to your opinions.

But my girl asked for the Oinker Sisters and the Teletubbies.

And even if it takes eBay flying parcels from China and paying a really talented lady with a sewing machine a king’s ransom to work around the clock, Mama ain’t letting her down.

when you screw with the autism gods .. nobody sleeps and posts ramble

*

It’s all my fault really.

I had to go and get cocky.

And we all know what happens when we get cocky.

I posted this on Facebook over the weekend ~

More Evidence That Melatonin Eases Autism-Associated Insomnia

With a note that said, “They could have just asked us “

Maybe it was the smiley face. That might have been the kicker. Or maybe it was me referring to Melatonin as a Godsend for Brooke in the conversation that followed in the comments. Maybe it was just that I brought it up at all.

Brooke was up giggling at 3:00 a.m.

And humming at 3:30 a.m.

And laughing hysterically at 4:00 a.m.

Finally at 4:44 a.m., she came into our room (yup, she Came Out Of Her Room At Night for the second time in well, ever), stepped on Luau’s head and asked me what would happen if Jesus and John the Baptist were cutting onions. (They would cry, duh.)

So, yeah. My bad. (Although if we’re being honest, she did seem pretty happy.)

So I guess this is my long way of telling you why I essentially don’t have a post this morning. What I do have is a little critter who finally fell asleep about an hour ago and Oh My God, we’re going to be exhausted all day, but cuddling with her was completely awesome and totally worth it because she’s the best cuddler on the face of the earth (kicking and squirming and thrashing notwithstanding.)

Anyway, what I also have, aside from the rambling mess above is the following. It’s a quote from a post that I wrote just after Christmas in 2008. It took us until then to get it right, but that Christmas was the one that taught me everything. Ever since, we’ve dropped the fireworks – no more midnight visits from Santa, no more huge overabundance of gifts. We brought the celebration of this sacred day home.

This year, when I’ve found myself caught up in the running, the panicking, the buying, the Here and There and Back Again and the Damn it, I knew I forgot something’s, I’ve looked back on that Christmas, dug in my heels and said no more.

This was Christmas, 2008. And God-willing, will continue to be every year hence.

There was a softness, a lightness this year. The hurry gone, the frenzy abated. A feeling that less was far more. There was a poignant awareness that the gifts we cherished the most were the ones that we already had. It was a lot of fun to find some small things for one another, but what it all came down to for me was the simple Grace that we said before our Christmas dinner. The same one that we say together before every meal, every day.

“Thank you for the food we are about to receive and for the precious gift of each other. Amen.”

Amen.

Read the post in its entirety HERE.

Have a great day, my friends.

I’ll be the one nodding off at my desk.

all roads lead to disclosure

It started with this:

Josie @josieiscreating ~ @diaryofamom you will love this. shiftjournal.com/2011/11/30/the…

which led me to this:

The Obsessive Joy of Autism

which I didn’t just love but adored and I knew I just had to read more, so I clicked over to this:

Just Stimming

where I read this:

Quiet Hands

And thought, “Oh my God, we ALL need to read this.”

And then I read more. And I came to this:

Dear “Autism Parents”

And when I got to this I nodded because it just made so much sense and because I get this.

God, do I get this.

I am not flattered when you say that I don’t really see you as autistic or it’s just a label.

Because what you mean is that “I don’t really see you as Bad right now,” and while I am incredibly grateful for that safety, I am also furious that autistic means Bad at all in the first place and that I feel I have anything to be grateful for in that entire situation.

It is, indeed, just a label. One without nearly the neutrality of, say, Campbell’s Chicken Soup. All your wishing in the world won’t change that, and taking away the words I have for my experience just hurts me so you can feel a little more enlightened.

For the record, I don’t really see you as much of an asshole, usually.

And then I read this:

Response

After which I felt compelled to write this:

for my autistic daughter, who is nearly nine, i thank you. i have done and will continue to do everything in my power to let her know that she is not alone, but i don’t live what she does. it is people like you who will be there – who i thank god *are* there – to light the way for her. i can tell her until i’m blue in the face that she is perfect – that she IS. NOT. BROKEN, that she needs help, not fundamental change. but it is you who can *show* her all that simply by being here. thank you. from the bottom of my heart, thank you.

And then I read this and I couldn’t breathe:

Please, Please Believe Me

I couldn’t breathe because now this topic that I’d spent so much time thinking and talking about was real. Now it was URGENT. Disclosure was no longer some hazy concept to be debated among parents – When? How? To whom? (and not for nothing, but isn’t there an arrogance in the implied ownership of that conversation?) But no matter, because it was no longer an idea – something that *would* matter down the road for my child, for yours, for all of our children – it was something that mattered NOW. And it didn’t matter in some far-off feel-good universe of the future, it mattered in the moment, in the here and the now – for survival.

When Julia said to the young man who had been beaten in his own school,

I can’t fix what happened to you, or to me, or to any of the people I know. It’s painful and humiliating and makes a person feel wrong and bad and powerless. Please trust me when I say that you are none of those things. You are not bad or broken. You are autistic, and you are also fine.

You deserve to be treated like a human being. You deserve kindness and respect and dignity. Someday, you will have those things.

I am fighting for that. My friends at the Autistic Self Advocacy Network (http://www.autisticadvocacy.org/) are fighting for that. Even the President is on our side—he made a speech in March for a conference I attended that stressed that bullying and abuse are civil rights violations. We’re gonna win this. But right now, you just need to remember that you are fine. There is nothing wrong with you. All the bullies and abusers in the world can’t change that.

You can write back to me if you want to, or email me at juststimming@gmail.com. You absolutely don’t have to. But there is a whole community of us out there who want to help, and who are sickened and outraged every time this happens, and who will always support you and have your back.

You are not alone.

I couldn’t breathe.

I couldn’t breathe because the ability for that young man to find Julia – to find his peers, his community, to find out that he IS NOT ALONE comes from us. The label is the map to the community. Once they know it exists, it will be up to the next generation to join it or eschew it. But without the words – without the label, there is no map. There is no choice.

I remembered a post I’d written for Hopeful Parents – one of so many on the topic of disclosure.

I’d written it after attending an educational advocacy meeting the night before in which I’d been asked – yet again – why Luau and I choose to be ‘so open’ about Brooke’s autism.

And I knew I had to bring that post home to Diary. For Tina Washington’s son. For Julia. For Brooke. For everyone out there who thinks or ever thought they walk(ed) this path alone. For everyone who has asked me why we are ‘so open’ about Brooke’s autism.

This is why.

Thank you, Julia. For everything.

Theirs to Define

Originally published on Hopeful Parents, June, 2010

*

It’s almost inevitable. If enough autism parents are together in a room, one of them will ask.

How did you decide to talk openly about Brooke’s autism?

I’ll tell them that I’m happy to run through our logic, but that first I must make the disclaimer that it’s a personal decision and that everyone has to handle it in the way that they think is best for their child. I’m big on disclaimers, you see. Nothing about autism is a One Size Fits All proposition. So I’ll say that none of us can crawl inside each other’s families. That we have to trust one other’s ability to choose the right paths for ourselves and our children.

And then I’ll answer the question.

I will tell them that we believe that the only way to extract the stigma from the label is to demystify it. To make it real. To give it a face, a name, a three-dimensional being.

I will tell them that we believe that awareness leads to compassion and compassion to acceptance.

I will tell them that we believe that ignorance perpetuates discrimination and fear.

Someone will whisper the next question like the mom at the dinner table in Saint Elmo’s Fire.

But have you told your daughter? Does SHE know?

I’ll answer that I have. That we use the words and the concepts as openly at home as we do anywhere else. I’ll tell them that I have no idea how much of it she understands yet. I’ll explain that her language just isn’t there yet.

Someone will ask why. But why does SHE need to know?

I’ll invoke the words of Dr. Stephen Shore. “I was lucky in that my parents used the word autism around the house for as long as I could remember. We didn’t know what it really was back then but it sure helped explain a lot of the differences.”

I will tell them that we believe that knowledge is power and knowledge of oneself is the greatest tool imaginable.

I will tell them that we feel that secrets imply shame or fear. Or both. I will tell them that I want neither in my home.

I will tell them that we believe that our daughter deserves all of the insight we can give her into her strengths, her challenges and everything in between.

They will ask BUT HOW? How do you tell them?

I’ll go back to Stephen Shore and tell them about his four-pronged method of disclosure.

1. Talk about the child’s particular characteristics. Cite strengths first and then talk about challenges.

2. Line up strengths with challenges – identify those that can be used to offset each other.

3. Non-judgementally compare their set of characteristics with other people. Include luminaries that feature prominently in history or popular culture. Newton, Einstein .. you know the drill.

4. Explain that the particular set of characteristics fit under a label.

Someone will say, Fine, so you talk to them about common characteristics and help them understand their challenges, but why do you need to put a LABEL on it?

She’ll spit out the word LABEL as if expelling a sip of turned milk from her mouth. LABEL.

I’ll ask why a name has to be a bad thing. I’ll ask if we can’t reclaim it for our children. Reframe it completely. Give it to them – make it theirs to define. I’ll find a passion stirred, the sleeping giant opening one eye and peering around the room. I’ll try to contain him.

I’ll ask a question of my own.

What if we could bring these kids TOGETHER? What if, instead of labeling them per se, we can give them a tool with which they can identify themselves and EACH OTHER? What if the label is a gateway to the monumental understanding that these kids are NOT alone? What if this group – this incredible group of people – this group that can so easily feel so desperately isolated from their peers – what if they found out that their differences, in and of themselves, are not so damn different after all?

I’ll try to rein it in, but I’ll fail.

I’ll turn to the woman who asked the question. I’ll leave her with one last question in return.

Can you IMAGINE the possibilities?

*

I am honored to have contributed to the Thinking Person’s Guide to Autism – the book, about which Steve Siberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science writes, “Refreshingly free of dogma, disinformation, and heavy-handed agendas, The Thinking Person’s Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them.” Get your copy HERE. Learn more about TPGA HERE.

Ed Note: When I originally published this post, I inadvertently omitted a chunk of text that I’d cut to move and forgotten to paste. Thanks to my helpful husband, the missing text and (its corresponding link) have now been restored.

take two

Diary of a Mom Facebook Status ~ December 3 at 7:36am

The plan for today is the Radio City Christmas Spectacular with Uncle Paul and his family. When he first suggested it, we were just coming off of our success at Godspell and I felt emboldened to try. But anxiety is running HIGH this morning and Mama’s confidence is waning. *gulp*

.

Diary of a Mom Facebook Status ~ December 3 at 3:02pm

For nearly 2/3 of the first act it was great. And then it, well .. wasn’t – summed up by Brooke shouting, ‘It killed me!’ and Katie sobbing while saying, ‘I just feel like everyone thinks Brooke needs you more than I do and it’s just not true’ (at the same time). Good times. #Don’tKnowUnlessYouTry

.

Diary of a Mom Facebook Status ~ December 3 at 5:59pm

I’m trying really hard not to live in anger tonight, but truth be told, I want nothing more than to take autism and its best buddy anxiety out to the woodshed and beat the crap out of them both.

.

Diary of a Mom Facebook Status ~ December 6 at 8:16 pm

I’m calling a do-over. I bought two tickets tonight to the Radio City Christmas Spectacular. Come hell or high water, Katie is going to get to see that show – with her mama sitting next to her the whole damn time. #WhatWeDoToMakeItRight

.

My personal Facebook Status ~ last night, approximately 7pm …

Chinese before the thee-ay-ter

*

Last night was the night.

The beginning of the evening damn near did me in. Already running late, I left the house in the rain without cash, a coat or an umbrella. I left us barely enough time to eat and in my haste to park I … well … I may or may not have driven Luau’s car into a chain that I didn’t see across an entrance to a parking lot and said chain may or may not have been forcibly dragged across his entire hood, scratching the living $@!% out of it in the process. Maybe.

And I may or may not have even sort of cried a little ’cause it was just too God damn much and I was starting to worry that I was seriously losing my stuffing because I really couldn’t figure out how it was that I could drive a car into a chain without seeing it until it was nearly in my lap.

But this is Katie.

She shrugged, insisted that the chain should have been painted yellow so that people could actually see it, reminded me a thousand times that the garage man said it has happened to other people too and that it was not just dark but raining so ‘it totally wasn’t your fault so please don’t worry about it’ and off we went.

She thanked me again an again for bringing her back. She squealed like she’d won a trip to Hawaii when I told her that yes, she was even allowed to get a soda if that was what she wanted. And cotton candy. And sure, baby, popcorn too. Why not?

Appreciation oozed from her pores.

We took silly pictures.

We laughed.

We ate cotton candy.

And we settled in to watch the show – again.

And it was kind of wonderful.

The end.

a bedtime story

*

It’s 10 pm, an hour past the girls’ bedtime. Luau and I are sitting up in bed watching train wreck TV from the week before. Marcus sings for his life on the X-Factor while my brain races through the day, the week, the list of looming MUST-DOs.

Our door creaks open. I wonder what Katie’s complaint is this time. Too hot? Too cold? Thirsty? Lost a stuffed animal in the tangle of bedding? Or my all-time favorite – we forgot to turn on the humidifier. Turn it on yourself, kid; you’re ten. But we all know it’s never about the humidifier.

I know it’s going to be Katie because while she comes into our room probably once a week after bedtime, Brooke Does Not Leave Her Room At Night. She may leave her bed. She’s been known on rare occasions to turn on her all her lights, dump every toy out of every box in the room and play until all hours of the night, but she Does Not Leave Her Room At Night.

She will be nine in March and yet there is still a monitor in her room because she Does Not Leave Her Room At Night. In years past she has wet her bed, sobbed in bed, vomited in bed, fought fevers and stomach aches and sore throats – all without leaving her bed. Never – not one of those times – did she Leave Her Room At Night.

So I wait to see Katie’s head rounding the corner and peeking into the room.

And I’m dumbfounded when it’s not her.

*

Brooke walks in as though she does it every night. She seems unfazed that, but for the glow of the television, the room is completely dark.

She walks straight to our bed and climbs up. She steps up and over Luau, then pulls the covers back between us.

“I had trouble sleeping,” she announces.

She continues to speak, but I hit record. I’ll get back to the rest of the words in a second – I just need to process these first. I roll them around in my head, smooth as water-worn pebbles. I had trouble sleeping, she said. The words were just so — typical. I don’t know that I’ll ever get used to combinations of words that sound so — typical. She continues.

“I am going to be with you in here and since I love you,” she says as she crawls in beside me and throws an arm around my shoulder. Apparently, it’s decided.

We let her stay for a while. I’m tempted to give Luau the boot and keep her with me for the night, but I know on so many levels that it’s not the right thing to do. But I want to.

She clings to me like a baby koala. Eventually Daddy says, “OK, Brooke, it’s time to go to your own bed now.”

I begrudgingly concede that he’s right and he makes a move to get up.

She doesn’t argue, but says, “I will go with YOU,” into my chin.

I scoop her up into my arms and carry her to her room.

When we get there, she insists that I leave the door all the way open and the light in the hallway on. Just as she’s Never Left Her Room At Night, she’s also always Slept With The Door Closed – In The Dark.

“Are you OK, baby?” I ask.

“Just a little sinus trouble,” she answers.

When will I learn?

“OK, Bert,” I say, smiling.

She reaches over to the laminated Teletubbies on her nightstand. She picks up the little red one.

“Po is feeling sad,” she says. Her eyebrows are pulled into a ‘V’ and her chin is curled down into her chest to show me Sad.

“Why, baby?” I ask. “Why is Po feeling sad?”

“Because her Mommy is going to work tomorrow and she wants her to STAY HOME,” she says. The last two words stand alone.

I kneel next to her.

“Oh, lovey. You tell Po that I’m sure that her Mommy is a little sad too. And that she’ll miss her a LOT tomorrow, just like always. But tell her that she’ll be home RIGHT after work and they will be together again. OK?”

I curl my left hand into a fist. My fingernails dig hard into the flesh of my palm.

With my right hand, I gently cup her cheek.

She considers Po for a moment, then kisses her on the head. “Don’t worry, Po,” she says. “It’s bedtime now. Mommy loves you. It’s bedtime now, Po.” She kisses her again, then sets her back down on the nightstand.

I kiss my girl and tuck her in – first the sheet, then the duvet, then the weighted blanket. I hand her Prairie Dawn. I kiss her again, then one last time. Then one *last* last time. I can’t help it. If I could, I’d swallow her whole. I move toward the door.

“You don’t like being away from me,” she says.

It’s a script. I taught it to her ages ago because I worried that she didn’t understand my leaving. I didn’t know how to explain that I have to work. I never wanted her to think that I simply didn’t want to be with her.

“No, baby, I don’t.”

“You like being with me.”

“I sure do.”

“And since you love me.”

“More than anything in the whole wide world.”

I stand in the doorway.

How many times have I stood in this spot, looking in on my girl in her bed – lingering long after I should have gone?

“Goodnight, sweet girl,” I say one last time. “Mama loves you.”

“Goodnight, sweet girl,” she says, “Mama loves you too.”

And with that, I walk away – leaving her door open, the hallway light on and my heart on her nightstand.

25%

Approximately 25% of children with autism will experience at least one seizure by the time they reach adulthood. ~ Epilepsy Foundation (also First Signs, National Autism Center and countless others that I don’t have time to cite.)

–

From 25 to 35 percent of people with autism will eventually experience full-scale seizures. Many others will have seizure-like brain activity, in which there is no obvious effect on muscles but potential effects on brain functioning, such as temporary loss of attention. ~ Science Daily, June, 2011

*

Until my friend, Tanya wrote about her son, Nigel’s first terrifying seizure, I had no idea. I have other friends whose autistic children suffer from rare and vexing forms of epilepsy, of course, but I’d always (ignorantly) thought of them as somehow being in a different category.

But when Nigel – a child very much like my Brooke in many ways – seized that first time, we all learned quickly that there are no categories with autism and epilepsy. That far too often – at least 25% too often – seizures stealthily lurk.

We have been lucky so far. Although we had a pretty scary gut check, Brooke’s EEG came up clean.

But we – all of us – need to be armed with information.

We need to know what to look for.

When the neurologist cum God-figure at Children’s cavalierly tossed out the “Well, you were right to come in. A quarter of children on the spectrum will experience at least one seizure by the time they are in their teens,” I wanted to scream. I knew it by then, but to hear it – well, it was different.

I wanted to ask why the hell he was telling us this *after* we’d come in to check on seizure activity. I wanted to ask why, when they handed us a diagnosis and then sent us on our way with a pat on the back and a sympathetic smile five years ago, no one mentioned that perhaps we should keep an eye out for something so, well – huge.

25% of our kids will experience seizure activity in their lifetimes. Good God.

So what do we do?

We do what we always do. We get educated. We find out what to look for. And, more importantly, we look into what factors might be making our kids more vulnerable.

Yesterday, a friend sent me a post that she’d written on the heels of a study released recently by the American Epilepsy Society detailing the unexpectedly high comorbidity rates of Photosensitivity and Autism / Epilepsy. Please read her post HERE. It matters. She has information that we need to know.

This stuff is scary. But information is power. The more we learn, the more we can protect our kids – and maybe even lower those damn numbers.

Epilepsy Foundation

 

mix mix mix

*

It seemed like such a good idea at the time. Well, at least sort of. Oh, hell, maybe not. Maybe it was a crap idea from the start, but I really thought it would be fun.

Perhaps I should have known when I was holding a crying Brooke on the stairs just because I’d suggested that we leave the house. Or perhaps I should have known when I looked at the menu online and realized that we’d have to bring something from home as a back-up plan. Perhaps I just somehow should have had the Spidey Sense to know better.

She’s not unhappy. She’s just absent. 

I thought she would like stirring the fondue. I didn’t think she’d eat it, but I really thought she’d like the mixing part. I thought that she’d do that Dora script that she always does when she stirs something, “Bate, Bate, chocolate!’ or that she’d say, “Mix, mix, mix, mix, mix, mix!” like she does when we stir the chocolate chips into the bowl when we make cookies. Or even say, “We’re making Chinese coffee!” like she does at the Japanese restaurant, mixing soy sauce with just about anything else at the table. She loves stirring, mixing, ‘cooking’.

I thought it would work, but she’s not there. She’s sitting with us, but my girl is nowhere to be found.

I thought the off time would serve us well. And it has – from what I can see, it looks like there is only one other party in the entire place. No kids crying, coughing, cooing or otherwise. Just us and a pot in the middle of the table just begging to be stirred. And she has no interest in either.

I tried.

Luau tried.

And then we’d given into the iPad and let her be where she needed to be.

Somewhere other than here. 

*

I want to be stronger about this stuff. I don’t want to break down because my kid doesn’t want to stir food into a damn fondue pot. I mean, really. Even typing that sentence I can hear how absurd it sounds. But we all know it ain’t about the fondue.

Katie looks at me looking at Brooke. “Mama,” she asks with concern, “why are you crying?”

I’m not crying. I’m welling up. There’s a difference, damn it. There is. Crying is well, you know that whole ugly shoulders heaving thing. Or at the very least it’s rolling tears. Yeah, that’s it. There have to be rolling tears. So it’s settled. I’m not crying; I’m welling up.

But when you’re ten and your mom is welling up, she may as well be crying. At ten, she’s not really interested in my self-protective semantics. She just knows Mama’s hurting and she wants to know why.

I hate these moments. I want to be stronger than this. Or at least I want her to think I’m stronger than this. But the gig is up. She knows. And she’s not letting it go.

“Please, Mama,” she says, “tell me. Maybe I can help.”

The words are hauntingly familiar. Because they’re mine. “Please, baby, talk to me. I’m here to help.” I say them all the time. Why should she do anything differently?

I try to demure, to smile and wave off the question, but she’s not letting me off the hook. She’s so tender that I’m irritated, almost angry. She should never be mothering me. Not her job. Her job is hard enough.

“Please, Mama,” she says again as she nuzzles into my arm. “It’s OK to tell me; I promise.”

She’s not going to let it go.

I don’t have it in me.

I give in.

Very quietly, I tell her that I had just hoped that this would be something that we could really enjoy as a family. All of us.

She looks at her sister, engrossed in her iPad. Ever so slightly, she smiles.

She picks up a skewer and pokes it through a strawberry, then holds the handle out toward her sister.

“Hey, Brooke,” she says, “wanna dunk my strawberry in the chocolate? It’s kinda like Dora!”

Brooke looks at Katie. I don’t realize that I’m holding my breath.

“Sure, Katie,” she says as she takes the skewer from her and gently stirs the strawberry into the chocolate. She peeks up and over the pot to see what’s happening inside.

She hands the now-dipped strawberry back to her sister.

We repeat the process again and again, skewering everything on the table until there’s nothing left to skewer.

She’s here. My girl showed up. She’s here.

Katie looks up at me. She’s beaming.

And I am welling up crying.