untitled

Dear Mrs. R-B.,

I understand willful ignorance. It’s a powerful thing – especially when it comes to our children. Heck, I spent a year denying that my baby girl had autism. So I get it. I really do.

But one day, something snaps. It has to. When you live with someone, love someone, PARENT someone, eventually the time comes when you see something that wakes you up – that drags you out of your bright shiny bubble of blissful ignorance. Something that just doesn’t sit right. Feel right. Can’t. Be. Right.

I find it hard – no, if I’m being honest I find it IMPOSSIBLE – to believe that in your daughter’s eleven years on this planet you haven’t had that moment yet. That moment just a split second before she plastered on that sweet, “Who me?” smile. That moment when you caught a glimpse of the face beneath the facade – the one that she shows to kids like my Katie. The ugliness beneath the “I’m so cool it hurts” exterior. Because, Mom? She is so cool that she hurts.

She plays with kids like mine for sport. She toys with the power that comes with your money, with your leniency, with the cool stuff that you buy her that serves as currency in elementary school. Currency that buys her not friends but minions who do her bidding lest they be her next target.

So it was in kindergarten when she asked the kids at a birthday party to raise their hands if they didn’t like the birthday girl.

So it was that two months ago, my baby girl finally – finally – came clean and told me about her insidious cruelty – her oh-so-crafty jibes, her just-under-the-radar manipulation.

So it is that her brand-new, begged for jacket – the one she simply had to have because she wanted so desperately to fit in – went abandoned after one wearing. So it was that I wouldn’t pull the story out of her until six months later when finally she could say to me, “You Know Who told everyone that it was SO last year as soon as I wore it. That she couldn’t believe I’d wear something so lame. But Mama, she’d worn one exactly like it the day before! I felt awful about it, but I just couldn’t take it anymore. I’m sorry.”

And so it is that I clean up mess after mess and try day after day to convince my girl that her worth – or God forbid lack thereof – cannot ever be determined by your daughter’s – or anyone else’s – opinion of her.

And so it is that my girl continues to swallow your girl’s shit and not tell me until days, weeks, months later. Because she thinks she has to. Because everyone else around her thinks they have to.

Because a school can’t change a child whose parents don’t see who she is.

But how is it? How is it that every teacher and every parent and every kid knows what you don’t see? How is it possible that you have no idea how much pain your daughter leaves in her wake? How is it possible that you’ve NEVER caught her in the act of making someone’s life miserable when she spends so much time perfecting it?

She’s good. I get that. The teachers have told me just how good. But she’s eleven. And you’re her mom.

It’s time, Mrs. R-B. Please. Not just for Katie but for so many more like her who are bound to cross her path. Watch your child. Really watch. See what’s happening. Do something.

Please.

Signed,

Jess

you’re invited

The birthday party invitation sits on the kitchen counter.

You are invited!

Come to my house for Fun and Games!

I don’t take the invitation for granted. In and of itself, it stands as a triumph of sorts.

I remember when the invitations didn’t come.

Ever.

But so too, it taunts me.

Fun and Games!

At the birthday girl’s house.

Fun and Games may be the latter, but they’re almost never the former for my kid.

The invitation should read,

Come to my house for Fun and Games!

Check your insecurities at the door!

Bring Support, Facilitation and Patience galore!

Luau asks me the question over dinner.

“How do you want to handle Gabby’s party next week?”

I’m quiet. I’m not sure what to say.

She’s already RSVP’d. She’s excited to go.

The only question is which of us will take her.

What I want is not what I want to want.

I tell him that.

“I want to want to take her,” I say.

“I want to not be worried about it.

I want to believe that seeing her with all those other kids who just operate on a totally different plane from her won’t break me.”

I stare into my plate.

I know that if I look up I’ll have to acknowledge the toxic cloud of shame that I’ve created with my words.

I’ve just told my husband that I’m afraid to take my child to a birthday party.

Who says that?

“I get it,” he says. “Completely.”

And I know that he does.

Which makes it better.

And worse.

He leaves it in my hands.

We don’t make a decision.

the glory theirs the duty ours

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Who kept the faith and fought the fight;
The glory theirs, the duty ours.
~Wallace Bruce

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My friends,

If you’ve been around here for a while, you’ve heard me talk (ad nauseam you might say) about the absolutely egregious lack of care for our nation’s military children with autism. You’ve also undoubtedly heard me talk about my friend, Rachel, who is leading the fight to fix it.

Yesterday, Rachel sent the following letter to every single chief of staff of every single member of the Armed Services Committee. When she shared it with me, I knew I had to share it with you. Because together, we can help to right this disastrous wrong. We can step up to the plate to care for the families of our nation’s heroes just as they step up to the plate every day for us. We can, in twenty seconds or less, do the right thing.

If you’re pressed for time, please feel free to simply click HERE and then be on your merry way. If not, then read the following to find out why this matters so damned much.

Thank you and God Bless.

Jess

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Happy Memorial Day Weekend, Ladies and Gentlemen of the Armed Services Committee Offices.

My name is Rachel Kenyon. I am a proud and battle-tested Army wife and mom of two beautiful babes, one with autism.

Currently, “TRICARE” military healthcare provides less than half the recommended treatments for autism, and only to children of active duty service members.

Service members who retire after more than twenty years and Wounded Warriors forced to medically retire are stripped of what little treatment TRICARE allows via the Extended Care Health Option (ECHO).

On Thursday, May 17, 2012, Congressman John Larson took to the House floor armed with embarrassingly large photos of our little family and made the case for Caring for Military Kids with Autism Act to be included as an amendment to the FY2013 NDAA. It worked, because for Mr. Larson, this had become personal. It worked because Rep. Tom Rooney had the courage to walk up to Chairman Buck McKeon and tell him it was personal. Mr. Rooney has two nephews with autism. Mr. McKeon did the right thing, because now he understood, it was personal. The amendment passed as part of the NDAA in the House.

Senator Gillibrand attempted this past week to do the same in the Senate Armed Services Committee markup session. The amendment was rejected.

I contact you today because this fight is so very personal for so many of us serving our country each day. Not only do I want my husband to feel that his more than 25 years of service warrant the medical care our daughter with autism needs, but I want my daughter to have the security of being able to access the tools that can give her a richer, more meaningful life.

It’s personal because I now hold 23,000 other children in my heart, and more than that many parents who serve our country. I love them as I love my own. I want them to feel proud of their country’s service to them in return. I want them to sleep at night, knowing that though autism may have knocked on their door, they can live their lives to the fullest with the care they need and deserve. It’s personal.

I know once you read the attached comments from your constituents, both military and civilian, you all will choose to do the right thing. To take this fight personally. To share with your fellow staffers and your Senators and Representatives that our families are proud. That our children are worthy. That if just one military child was denied the cancer treatments he or she needed, we would not be wasting time with emails and petitions. A true American who hears that 23,000 military children are being denied the medical standard of care for autism takes that personally. Well, for real American patriots, it is so very personal.

I appreciate your time and I wish you all a fun, relaxing Memorial Weekend in remembrance of those who have made the ultimate sacrifice.

Our little family will be spending another weekend living with autism in our house and struggling to understand why we have to fight this battle, too.

Best,

Mrs. Rachel E. Kenyon

Wife to Command Sergeant Major William W. Kenyon

Mother of two beautiful babes – one with autism.

http://www.change.org/petitions/congress-make-recommended-autism-treatment-available-to-all-military-children

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Ed Note: As promised in the letter above, Rachel passed on scores of comments to the Armed Services Committee. You can read them all HERE. But of the comments, one stood out to me the most.

Jennifer — Virginia, United States 5/26/12

“I am signing this because My husband has 25+ years AD Army Special Forces, and we have an 8 year-old son with Autism. My husband has deployed multiple times throughout the various wars, which our country has been involved in since the 90′s, risking his life each time. He recently returned from a yearlong combat deployment in Afghanistan and is scheduled to deploy again in August.

My son was diagnosed with Autism at 3 years old and began Applied Behavior Analysis therapy from the age of 4 years via the Extended Heath Care Option (ECHO) Program. Although the recommended amount of ABA therapy is 30 – 40 hours/week, my son only receives 10 hours/week, not near what is recommended, but better than nothing. Due in part because of these services, my son has gone from functioning as an 18 month old to functioning of a 6 year-old; And this would not have been so had these services not been available.

Although my husband has more than enough years to retire from military service, he cannot retire for fear of losing all autism therapies for our son, because retirees are not eligible for ECHO services. As stated earlier, my husband will soon be heading back to Afghanistan for another year-long deployment. What I think is important for you to know is that if my husband is injured while serving his country in Afghanistan, and forced to medically retire, my son will no longer be eligible to receive autism therapies. Additionally, if my husband is fatally wounded while serving his county in Afghanistan, my son will no longer be eligible for autism therapies.

My husband has made many sacrifices for this county and his family. I’m signing this petition because the medically necessary therapies that my son requires should not preclude him from having a father present in his life.”

This is why, my friends. This is why I keep coming back to this topic. This is why I flew to DC twice last month, spending money I don’t have and taking time I could ill afford to take. This is why I hound my dear friend, Drew in Senator John Kerry’s office. This is why I have recently made a new friend in Senator Scott Brown’s State Director.

This is why I NEED YOUR HELP to make this right.

This is why I am begging you to take twenty seconds of your day – on Memorial Day, no less – to sign a petition that will go straight to the Armed Services Committee – the people who will debate this topic THIS WEEK.

This is why.

For Jennifer. For her husband. For their son. For Rachel. For her husband. For their daughter. For 23,000 like them. Please, do this. I can think of no better way to honor those who gave the ultimate sacrifice for our freedom than to step up to care for those who still fight.

Twenty seconds of your time can truly change lives.

I’m begging.

CHANGE.ORG

memorial day weekend to-do list

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The following is based on a post originally published in 2010 …

Graves at Arlington National Cemetery

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To-Do List for Memorial Day Weekend

Take white pants out of storage – Hooray!

Wash towels and bathing suits – sort through to see what still fits the kids

Trim the hedges by the fence

Move the paving stones, call landscaper to see if he wants them

Supermarket:

Hamburgers

Hot Dogs

Buns

Bratwurst?

Mustard

(Check to see if we’re low on relish!)

Farmer’s Market:

Sweet Corn

Green Beans

Honor those who have paid the ultimate price for our freedom.

Reach out to the families of the fallen.

Remember those who are in harm’s way.

Do something to help their families here at home. 

Teach our children what true sacrifice means.

Show them what honor, gratitude and respect are all about.

*

“The only person standing is the man in a wheelchair.”

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Remember.

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What’s on YOUR list for the weekend?

USO

Joining Forces

Act Today For Military Families With Autism

Change.org

The Controversion of Aidan B

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My cousin, Sue shared the following with me last week. As soon as I read it, I knew I needed to share it with you. On its surface, it’s laugh out loud funny. Just below the surface, it’s an achingly familiar story about a child desperately seeking connection and a mom trying hard to honor his method of finding it.

I am grateful that its author, Cheryl Murfin, a Seattle-based writer, editor at Seattle’s Child and mother to Aidan, 13, and Maddy, 16, has been kind enough to allow me to share it here.

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The Controversion of Aidan B

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My son says he is Jewish. I am not sure what to do about this, since, neither I nor his father is Jewish. We are about as goy as you get.

I know where the idea came from, of course. It came from the book, 10 Little Giflte Fish, being read by my former partner in his best New York-Jew-sitting-at-a-back-table-at-Katz’s-Deli voice every now and then for a year and a half.

It comes from the co-mingled holidays we adopted — you show me a kid who doesn’t want to celebrate Chanukah once he figures out it’s EIGHT days of gifts. No matter that they are small tokens. Numbers matter. It comes from my friend Andrea’s fairly incredible matzo ball soup, brought over for one hilarious joint Passover dinner in 2008. It comes from the fact that he is suffering his first crush – on a girl named Rebecca Rosenberg.

It comes from missing the man he calls his “first friend,” even though at the break of our relationship the two were experiencing a struggle of wills.

It comes from being autistic and wanting to belong to a group.

So I know where it comes from, but what is a Catholic-born-but-atheist-opted parent to do? Thank God he’s circumcised already; that’s all I can say. Oy.

This year for Chanukah I decided to bring my son to the Jewish Secular Circle – a group dedicated to Jewish culture, without the religious baggage. It was a friendly gathering, lots of chit-chat and enough potato latkes to sink a ship. But halfway through the evening, I notice my son is introducing himself to people as Moshe.

“Hi, I’m Moshe! What kind of car do you drive?” he says to anyone who will listen. “What kind of car do you drive?” is how he starts conversations. It feels comforting to him as his nerves jitter in the face of meeting someone new, like rubbing a rabbit’s foot in your pocket. Eventually I redirect him to a corner and demand that he introduce himself by his own name.

“But MOM,” he sighs, clearly frustrated at my lack of awareness. “I CONTROVERTED!” I can feel the Manischewitz going up my nose.

I decide to let it go. I know this is his way of dealing with a breakup that he doesn’t understand. He loved my partner, envisioned Chanukahs far into the future. He is coping, Moshe is. Clearly he takes his controversion to Judaism seriously.

My compassion is just overriding my embarrassment when I notice that Moshe-Aidan is actually speaking to people in what he calls his “Jewish accent.”

How can I describe this? Think Irish brogue with an East Coast up-tone punctuated every other word with “Oy” and “What a Tsuris!” Except that he doesn’t know what a tsuris is. I think he means what a schmuck, but then I realize I am glad he is NOT saying that.

“Lose the accent!” I hiss-whisper into his ear. I’m trying not to make him feel conspicuous. I am trying to be supportive.

“But MOM,” he hisses back, with no hesitation. “I’m CON-TRO-VERT-ED!!”

We are in this place, Moshe and I, where I realize I must let him make his own in-roads, his own missteps and achievements.

And so, I force myself to walk across the room to give him the space to meet people and to be just as Jewish as he’d like — whatever he thinks that is. He seems to be doing very well; I see people smiling, then looking at him in great surprise and quite a few patting him on the back.

I can’t help myself. After about five minutes of this back-slapping, I mosey on over in his general direction to listen in — just to see how he’s doing with this new social challenge — when he sidles up to a very old man. A man clearly from New York. A man very clearly Jewish-born and raised. He’s got the shawl. He’s got the yarmulke. He has reached his hand out to my son with the most tender of eyes.

Just as I come into earshot, I hear this brief conversation:

“Hi! I’m Moshe! What kind of car do you drive?”

The man, whose name tag says Rabbi Weitz, informs my son that he drives a Volkswagen bus.

“You know the GERMANS make those, don’t you?” says my Moshe.

“Yes, I do.”

“OK, just checking.”

“So, were you raised in the synagogue or are you just learning about our culture tonight?” the rabbi asks.

“Ohhhh, well…,” starts Moshe.

I can feel something shift in the air, a bomb about to drop. I race to intervene before he can get one more word out. But I can’t cross that much space without looking like I am attacking my son and so he continues on unbridled.

“Well,” he says again, and I can tell he is trying to find something important to justify his new-found faith. “I’m Jewish because my Mom chopped off my penis and then her boyfriend dumped her because he’s from New York.”

The Rabbi’s eyebrows are raised in a most uncomfortable arch. I snatch Moshe from the jaws of conversation and march him toward the door.

“What? You DID chop off my penis and that makes me Jewish!” He tells me.

“Not another word,” I say as I push him toward the car. “You can talk to your father about your penis – he’s the one who made that decision. And right now, I am EXTREMELY controverted!”

And really wanting the Jewish ex who dumped us to choke on his 10 Little Gefilte Fish.

the community support page

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Diary’s COMMUNITY SUPPORT PAGE is up and running, my friends.

Please click –> HERE  <– to see what it’s all about.

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The difference between a helping hand and an outstretched palm is a twist of the wrist.  ~Laurence Leamer, King of the Night

one voice

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And I want to tell you how incredibly proud I am of my dear friend Rachel, who kicked some congressional ass yesterday. Who told her story, her family’s story, and in so doing brought a briefing room first to tears and then to their feet.

I want to tell you that Rachel is incredibly special in so many ways, and yet I want you to know that she’s not special at all. I want you to know that there is nothing in her that is not in each and every single one of us, and that once it’s awakened, it can move mountains.

~ From Blogging in Twelve Minutes or Less, February 1, 2012

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This is the sound of one voice
One spirit, one voice
The sound of one who makes a choice
This is the sound of one voice

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For Immediate Release: Contact: Ellis Brachman
May 18, 2012 (202) 225-1400

Larson Measure to Help Military Children
with Autism Included in Defense Bill
Congressman Says Local Advocacy Critical to Measure’s Success

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This is the sound of voices two
The sound of me singing with you
Helping each other to make it through
This is the sound of voices two

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WASHINGTON – In a huge victory for military families struggling with autism, the annual defense budget that was passed by the House of Representatives today includes an important provision authored by Congressman John B. Larson (CT-01) that will ensure that TRICARE – the military healthcare program – fully covers the treatments that military kids with autism need.

Larson’s measure, the Caring for Military Kids with Autism Act (H.R. 2288), which had 70 bipartisan cosponsors, was written in response to the appeal of a constituent – Rachel Kenyon, the wife of Sergeant Major William Kenyon of the Connecticut National Guard and mother of two – who spoke out at an event about the many struggles that military families with children with autism face with their TRICARE coverage.

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This is the sound of voices three
Singing together in harmony
Surrendering to the mystery
This is the sound of voices three

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Specifically, the language included in the National Defense Authorization Act of 2013 (NDAA) will ensure that the children of Army, Navy, Air Force, and Marine Corps members that have an autism spectrum disorder (ASD) diagnosis will no longer face caps in TRICARE on a behavioral health treatment, known as applied behavior analysis. It would also ensure that the children of military retirees that have an ASD diagnosis would have access to applied behavior analysis treatment.

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This is the sound of all of us
Singing with love and the will to trust
Leave the rest behind it will turn to dust
This is the sound of all of us

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Congressman Larson voted for final passage of the NDAA, although he had some concerns with other provisions included in the bill.

“While I am concerned with some of the other provisions of this legislation, I voted for final passage because passing this bill was the right thing to do to move the process forward, and I am confident that many of the differences can be addressed when the bill is considered in conference.”

The legislation must now be approved by the Senate before it can become law.

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This is the sound of one voice
One people, one voice
A song for every one of us
This is the sound of one voice

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This is the sound of one voice

Starting a revolution.

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Think you can’t do anything to change the world?

Think again.

All it takes is one voice.

Yours.

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* Press release from Congressman John Larson’s office, May 18, 2012

* Lyrics to One Voice, Wailin’ Jennys – Click HERE to hear the song

in summary

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Oh my God.

I just lost this morning’s post, my friends.

All of it.

Poof.

Gone.

Into the ether.

Yes, I know. Save as you go.

Thank you, that’s helpful.

I didn’t.

I was too busy writing it to save it.

My bad.

I’ve tried everything to retrieve it, but it has fully and irrevocably disappeared into the black hole of the Interwebz.

I don’t have time to rewrite it.

I don’t even have time to write THIS.

But I have to.

Because I need you to know.

Miracles happen.

So here’s the summary of the lost post.

Two monumental events:

One public and political, far-reaching and life-changing for thousands.

One personal and close to home, life-changing for one (plus three).

One can be found HERE

The other here ..

Yeah, I’d written a LOT more about it.

But then it went poof.

So, here’s the short version.

Autism coverage for our military families was added as an amendment to the National Defense Authorization Act in the House yesterday, thanks to the dogged determination of a mom and her Congressman and a whole lot of other people like Karen Driscoll and Buck McKeon and Autism Votes, all of whom I’d carefully detailed in the lost post.

The bill goes onto the Senate next. It ain’t over, but this is HUGE.

So that was one – the big one with far-reaching implications for thousands.

But there was a second one too.

My girl helped cook dinner. The very child whose fear of the stove kept her paralyzed for months decided that the best way to conquer the thing she feared the most was to participate in it.

After months of learning to cook with her BCBA, conquering her fear baby step by baby step, she ASKED to help Luau cook dinner.

Twice.

So there you have it. The highlight reel of what was a very long, very detailed, very emotional post.

Oh, and I’d wrapped it up with this, my favorite quote from another mom.

“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”

So yeah, post lost. Progress won. Miracles Happen.

The end.

chimney access?

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Did I mention that I’m going back to DC tomorrow for another meeting at the White House? This time we’re meeting with Mrs Obama and Dr Biden’s Joining Forces for a conversation about autism and the military. So grateful to the First and Second Ladies for creating this wonderful organization to support our military families and for focusing their time and energy on the unique challenges of autism. #TheyAreListening #Hooah

~ Diary’s Facebook status, Sunday night

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No one seems to know why they have these really small doors all over the EEOB (the Eisenhower Executive Office Building where most of the White House offices are located). Left to my own devices yesterday, I decided that it must be where they keep the Oompah Loompas who actually run the place.

~ Diary’s Facebook status, Tuesday night, along with the picture below

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When I got back from the White House on Monday night, I went on a mission to try to figure out why these tiny doors (only five feet tall) exist.  I googled until my eyes crossed, but came up frustratingly dry. I called the White House Visitor’s Center. They didn’t know. I tried the White House Preservation Society. They didn’t know. Hell, I even called the White House. And they didn’t know.  And they’re like, ya know, there. No one seemed to know.

But I wasn’t giving up. And as per my recent pledge to seek help from the community, I decided to reach out and ask for it.

Oops.

I made the mistake of asking my friend Rachel. (For the record, she’s the one who took the picture above.) I told her that her mission, should she choose to accept it, was to find out why on God’s green earth there are five foot tall doors in the EEOB.

Rachel is a military spouse. And an autism mom. Not exactly the type to shrink from a challenge.

She was on the case.

Within minutes, she texted me. The conversation went something like this:

(Ed note: A screen shot would have been more fun, but it also would have included the actual language that we used, which was not exactly family friendly. Below is an abbreviated and sanitized (OK, VERY sanitized) version of our exchange.)

Her: Chimney access. http://georgewbush-whitehouse.archives.gov/history/eeobtour/ What do I win?

Me: Dude, are you making this up? I looked at this website yesterday and found nothing. Chimney access?

Her: Yes. Chimney access. Not Oompah Loompas. Sorry.

Me: I need proof. I’m not buying your story. Where on this website did you find anything about chimney access?

Her: I didn’t. I used my brain.

Me: You’re fired.

 *

Within minutes, an e-mail popped up in my inbox. It read,

From: Rachel

To: Jess

Because even when you ignore my brilliance, I still love you. Cheers. ;0)

And as if to make the point that military autism moms ain’t to be trifled with, she attached a photo.

Well played, my friend. Well played.

wakeup call – part two (loud and clear)

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Ed Note: Please click here to read the first half of this post – Wakeup Call – Part One

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We head down the stairs to start our morning. Katie is in the den, watching TV. Brooke’s not ready to interact with anything human so she heads straight for the office and settles into the comfort of the computer. I offer breakfast, but she makes it clear that she’s not ready for that either.

Katie, on the other hand, is only too happy to accept. I head to the kitchen and set about making her eggs.

I take out the pan and set it on the stove. I spark the flame as I drop the butter into the pan.  While it melts, I crack open the laptop. I check for responses to my query.

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My God, we’ve GOT to get this kid some help. Someone, anyone who can tell him it’s OK. That HE’S OK. That it will get better. That he’s not alone. That somebody out there gets it – has lived it – has come through it.

Yes, that’s it. He’s got to know he’s not alone.

Resources are coming in. I cut and paste as I see them. But there’s one that I’m waiting for. The man who stepped forward and said, “I run a closed page for gay, autistic people.” It’s him I’m hoping to hear from. He’s the one that holds the key to community for this kid. 

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The smoke alarm is loud and shrill – it’s rhythmic pulse screaming my transgression to the world.

“WAKE UP! WAKE UP! WAKE UP!”

I turn around in a daze.

The butter is long gone, having burned into a black residue on the bottom of the pan. Smoke is everywhere. The alarm is unbearably loud. Brooke is screaming.

I turn off the stove and sprint into the office. I scoop my terrified girl out of her chair and into my arms. I press her right ear into my shoulder and cover her left with my hand. It’s no use, really, but it’s all that I’ve got.

I scream to Katie over the alarm, “Baby, get Daddy; I’m taking Brooke outside.”

There’s no need – Luau is already halfway down the stairs.

Brooke and I run for the porch.

We’ve done this before.

Sadly, It ain’t our first rodeo.

“It’s OK” I tell her as we get outside. “It’s OK.”

Within a minute, Luau has the alarm turned off.

The siege is over.

“It’s all done, baby,” I tell her. “it’s all done.”

It’s too late.

“Do you want to stay out here for a few minutes?” I ask. She points to the steps.

We sit together on the steps.

She is still in my arms.

She is twitching – her body tensing and releasing involuntarily.

She is terrified.

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January, 2012 …

It’s dinner time.

I try to coax her into the kitchen.

She takes a few steps, then bounces off an invisible wall.

Have you ever seen a firefighter repelled by overwhelming heat? It may be invisible; but it’s impenetrable.

She reels backward into the office.

I offer her my hand again. I promise to show her that the cooking is all done. That it’s OK to walk into the kitchen now. I tell her that we will look at the stove together before we walk all the way in.

“There’s nothing on the stove, baby,” I say. “I promise.”

She looks leery.

“No pan?” She asks.

“No pan,” I say again, “I promise. Let’s go look together. I’ll be right here with you.”

Her body is rigid. She’s not moving.

“No pots?” she asks.

“No pots,” I say.

“There won’t be any noises,” she says.

“No baby, no noises,” I promise. “Let’s go see.”

Together, we take a tiny step forward. I’m hopeful.

Then not.

She drops my hand and bolts in the other direction. She runs in a tight circle – into the hallway, around the corner, into the living room. and back through the office door. She is covering her ears with her hands. She’s no longer talking, but yelling.

“NO NOISES! THERE WON’T BE ANY NOISES!’

God damn it.

Academic challenges? Bring ‘em on, Bucko. Difficulty with diet? Self care? Social Pragmatics? Transitions? We’ll figure em out. Every one of them.

But this.

I can’t ‘fix’ this.

I can’t make it OK.

I want to scream with her.

-

That was January.

We’d made progress since then.

So, so much progress.

One of two goals we’ve focused on with the BCBA who’s been helping us at home.

Step by step, brick by brick, we’d made progress.

And in one fell swoop, I’ve just dismantled it.

In one careless moment, I’ve brought her screaming back to square one.

To her home as a war zone.

To the place that she lives as a place where her worst fear may be realized at any moment.

Where there is no safety.

-

With each little jerk, she emits an awful noise. It’s guttural, animalistic, violent.

She clings to me.

Luau comes to check on us. He doesn’t see us at first, so he calls out. I’m afraid to respond.

In these moments, me talking to someone else is enough to unravel the one thread we’ve got left. I stage whisper, “We’re over here.”

She whimpers.

He comes around the corner. “You guys, OK?”

My eyes fill with tears as I look up at him.

-

I did this.

I let someone else’s kid come before ours. 

I let the needs of the world outside our door make me forget about the very real needs of the one inside our home.

I did this.

-

All I can say is, “I’m sorry.”

He heads back into the house to clean up the mess I’ve left behind.

I rock my girl, trying desperately to stuff the demons back into their box.

I whisper in her ear, “I’m so sorry, baby. I’m  so, so sorry.”

-

I look up.

Yes, God.

I heard the alarm.

Got the wakeup call.

Loud and clear.