a diary of a mom

November 30, 2011

hey, imodium, want to talk advertising contract?

Filed under: Uncategorized — by jess @ 5:48 am
Tags: , , ,

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A quick note to anyone who arrived here by searching Google for an individual word contained in this post ~

 You are in the wrong place.

By a lot.

We sincerely apologize for any inconvenience and wish you all the best of luck in finding what you’re looking for FAST.

Godspeed, friends.

~ The management. 

*

Since I began writing Diary some three and-a-half years ago, I have had the good fortune to have repeatedly engaged in some pretty incredible dialogues with you, my readers. Over the course of that time, we’ve had some amazing conversations – some perspective-shifting, some enlightening, many downright life-changing. Again and again I have been awed by what I have learned from you.

But, well, with all due respect to all of the others, I have to say that the e-mail that I got the other night takes the cake. I’m pretty sure that it is, and shall remain, the best e-mail EVER – like in the history of the world.

No need to take my word for it though. Its author was kind enough to allow me to share it with you.

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Jess,

I’m a follower of your blog.  And your Facebook page.  And your Twitter account.  It sounds strange to type that and not come across as a stalker!  I am a momma to a six-year-old girl with low-functioning autism (and physical disabilities, too).  I’ve emailed before – you may remember a video I sent you of my girl laughing while watching a clip of Brooke.  We’ve come to know and love the DOAM family!

As I know you’ve heard from so many before me, I must say that your gift of words has been a blessing to me.  When I’m speechless, you say it perfectly.  Thank you.

So, um… I have to share a little story with you.  And I hope when you finish reading it, you are left laughing… and not offended.  (fingers crossed)

My son, who is twelve years old and still battles a speech impediment with that dang /r/ sound, doesn’t always articulate well.  He will talk fast, mumble, and trade in almost every single /r/ sound for a /w/ sound.  He hates to read, but last year, he finally got hooked on the Diary of a Wimpy Kid series.  However, whenever he says the title of the book, it sounds as if he is saying, “Diarrhea Kid.”  (Well, really, it’s closer to “Diawwhea Kid.”)

(Do you see where this is going yet?)

I quote you a bunch.  I read excerpts from your blog to my husband all the time.  (Eesh.  Another odd, stalker-like statement…)  When I share your words with Brian, I tell him that it’s from “Diary of a Mom.”  And, inevitably, Brian will ask, “Diarrhea Mom?”  

So, there you go.  You have your own, special, very-odd nickname at the Murray house.

Diarrhea Mom.  

:)

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Thank you, Donna.

This made my week – in so many ways.

Much love to you and the family.

~ Diarrhea Mom

November 29, 2011

HO HO HO

Filed under: Uncategorized — by jess @ 6:35 am
Tags: , , , ,

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OK, let’s be honest. Holidays and autism are a tough mix. And there are some particular traditions that one could easily argue were established for no other reason whatsoever than to, well, torture our children. Case in point – the Santa visit and photo-op.

Some of you might remember that last year, at the age of seven and-a-half, Brooke had her first-ever successful visit with the big guy. There were myriad factors that made it work, but none that was more important than a patient and gentle Santa who intuitively seemed to understand that our girl needed a little extra room, a little extra gentleness and a lot of extra patience. He was a gift.

After last year’s success, we were emboldened to try again. Because that’s what success does, doesn’t it? It builds on itself. It gives us the confidence to try again – to push the envelope ever so slightly farther, to expect and demand just a little bit more.

So we headed out to the Christmas Park on Sunday night with high hopes. We talked about what we would ask Santa to bring for Christmas. We prepped as though we knew it would work, because we knew that it *could*.

When we walked into the park, Katie was eager to ride the rides and take in the lights, but Brooke was all business. She was there to see Santa; the rest would follow. Katie convinced her to ride one ride and then we all followed her on a beeline for Santa’s cottage.

The line wasn’t easy. Babies cooed and cried and toddlers whined. Santa went on a break to ‘feed the reindeer’. Gotta love  *that* euphemism, eh? So we split up. I waited on line while Luau and the girls wandered through the cottage, poking around and looking at the various displays. As Santa came back to his station, the girls followed on his heels, rejoining the line to wait for a chance to see him up close.

When it was her turn, Brooke approached Santa slowly. She went up to him on her own, but stopped a couple of feet from him and pointed. “You say, Ho! Ho! Ho!” she said. It wasn’t clear if it was a declarative statement or a command, but Santa had it covered.

“That’s what I sound like when I laugh,” he told her. “But there’s only one way to make me laugh. You have to tickle my beard.”

She was happy to come close enough to oblige and he was quick to reward her with a hearty, “HO! HO! HO!” She couldn’t have been happier.

He asked her what she wanted for Christmas and she told him. “I would like a hamster.”

God bless him, Santa looked over toward me and Luau before responding. I shook my head ever so slightly so he said, “Oh, gosh. Wouldn’t you know, my dear, Rudolph’s pet hamster had babies but we JUST gave the last one away today. If I don’t bring you a hamster, what else would you like?”

I could have kissed the man on the mouth. Except that would be creepy, so ya no, not really. 

After a few more tickles of the beard eliciting a few more HO! HO! HOs! it was time for the obligatory picture. “Over here, honey. Look over here!” the kid behind the camera yelled.  I snapped back, “Please don’t worry about where she’s looking.” I sounded like a – well, um, yeah. Hey, I’d said please. I felt badly, but hey, those pictures always suck anyway, right? I mean, right?

Maybe not so fast.

After Katie took her turn with the big guy (and just to mess with him told him she wanted a unicorn), we grabbed the photographer’s information and went on our merry way, half-heartedly promising to look up the photos online.

I was perfectly happy with the photos I’d snapped with my phone. I mean, I had this ..

And this ..

And this!

And this .. (What, you thought I’d leave her out?)

So really, why on earth was I going to need or want anything else?

And then I went online. And I saw this ..

(Ed note: We did pay (a LOT) for the digital image of the following picture. The company has yet to send it via e-mail but I have the receipt and want to be clear that I am not stealing anyone’s property here. Moving on ..)

(As soon as we get the actual image, I will replace the proof so there isn’t writing across my kid’s face.)

Upon seeing the picture, I wrote a note to some of my Mama friends. This is what it said,

Last night we went to see Santa. Last year was the first time B had ever gotten close to him / talked to him.

This year? Holy effing AMAZING batman.

And a picture. We got a picture. You know the stupid one they try to get you to buy? And you don’t cause it’s stupid and a rip off and you took your own anyway? That one? I bought it. I couldn’t pay fast enough.

The experts can say all they want about stagnation and regression and growing social / academic gaps. And I know that it’s all true — in context.

But this picture tells a different story, Mamas. One of progress and development and quantum leaps forward.

That’s right.

So Merry %$@#!& Christmas.

**

If your kiddo has yet to embrace Santa, please don’t lose hope. It can happen. And when the time is right (and the Santa is right) I promise it will have been well worth the wait.

Ed note: I will be continuing to compile my contributions to #YouMightBeAnAutismParentIf … HERE, so please check back to see the latest additions. Or join the fun on Twitter HERE

November 28, 2011

i scream, you scream ..

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It’s unseasonably warm – a balmy sixty degrees in New England at the end of November. Brooke and I are crossing the street, headed for the ice cream shop.

I watch the door to the shop open and close as we walk toward it. I fear we’re not the only ones with this idea. The shop is small and the acoustics are awful. It’s a combustible mix that we know all too well.

“Brooke,” I say, “the ice cream shop might be crowded. You going to be OK?”

“Just a little sinus trouble,” she answers.

My fault. She always invokes Burt in Elmo’s World Happy Holidays when I ask if she’s OK. I take a different tack.

“OK, baby. What should we do if it gets too loud while we’re waiting on the line?”

“Cover my ears,” she says.

“That’s a GREAT idea,” I tell her. “That’s perfect.”

“And what will you do if you feel overwhelmed?”

It’s a big question.

She takes it in, processes it, then buys time by asking, “What’d ya say?”

I repeat the question.

“What will you do if you feel overwhelmed?”

She thinks.

We walk.

I wait.

After a moment, she speaks.

And when she does, she answers the question with all of the straightforward, no bullsh-t, raw, this-is-who-I-am Brooke-ness that I live for.

“I’ll scream.”

**

Ed note: #YouMightBeAnAutismParentIf … continues to thrive on Twitter. It’s been fabulous to have seen so many of you there joining in the conversation.

If you haven’t dipped a toe in the Twitter water yet, don’t be shy. Or do be shy. Heck, just do whatever feels comfortable for you.

In the meantime, I’ll add my new contributions here so that those of you who have drawn lines in the sand can see them too. 

**

jess
#YouMightBeAnAutismParentIf you + kiddo are in pjs @ 5:45 on fri night bc the planned family dinner out never made it out of the house.
jess
#YouMightBeAnAutismParentIf you’re pretty sure your kid would *never* leave the house if given the choice.
jess
#YouMightBeAnAutismParentIf you’ve started to think that flapping and spinning r actually a pretty reasonable response to the world.
jess
#YouMightBeAnAutismParentIf You know full well that you ‘buy’ a good day with a tough evening. #KidCanOnlyHoldItTogetherSoLong
jess
#YouMightBeAnAutismParentIf the next person who tells you that God doesn’t give you more than you can handle might want to duck.
jess
#youmightbeanautismparentif u’ve looked at ur house b4 guests come over from what you imagine would be their perspective. + wanted to cry.
jess
#youmightbeanautismparentif your NT ten year-old can run circles around most BCBAs.
jess
#YouMightBeAnAutismParentIf you’ve ever texted a fellow mom friend: quick, say something funny. i’m losing my sh-t.@frannyteekay
jess
#YouMightBeAnAutismParentIf your NT child has said the words ‘SO EMBARRASSING’ – through tears – in the last 24 hours.
jess
#youmightbeanautismparentif what should be the simplest, most run-of-the-mill decisions take on the weight of Sophie’s Choice.
jess
#YouMightBeAnAutismParentIf ur ideas of celebrity + admiration have changed dramatically over time @aneeman @johnrobison #templegrandin etc
jess
#YouMightBeAnAutismParentIf you’ve learned to stay eerily calm in the middle of a sh-tstorm.
jess
#YouMightBeAnAutismParentIf you’ve ever seriously considered taking a swig of your kid’s anxiety meds.
jess
#YouMightBeAnAutismParentIf you don’t *prioritize* so much as *triage*.
jess
#YouMightBeAnAutismParentIf you’ve learned that human suffering is not a competitive sport @autismville
jess
#YouMightBeAnAutismParentIf you try to get the dark black smudged eye liner under your eyes off, only to remember you’re not wearing makeup.
jess
#youmightbeanautismparentif you’re just like a regular parent – on steroids.
jess
#YouMightBeAnAutismParentIf you know that when you’ve met one person with autism, you’ve met *one* person with autism.
jess
#YouMightBeAnAutismParentIf you’ve discovered that ‘family’ need not be defined by blood.
jess
#YouMightBeAnAutismParentIf you simply can’t die. EVER.
**
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See all of my contributions HERE.
See the entire thread HERE.

November 25, 2011

#youmightbeanautismparentif…

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If you’re on Twitter, you may have noticed something of a phenomenon lately. Over the last week or so, a community has begun to form. Some brilliant soul (if you know her / him / them please leave details in the comments!) began to use the hash tag #YouMightBeAnAutismParentIf .. and it caught on. Like really caught on.
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Parents of children with autism are connecting with one another around the hash tag. They’re sharing their stories – 140 characters at a time, they’re offering us all windows into their family’s celebrations, their heart-breaks, and above all, their overwhelming love for their kids.
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It’s a pretty amazing thing.
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I both love and hate reading the various tweets. I love them because they remind me that we’re not alone. I hate them because .. well, they remind me that we’re not alone.
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The following are some of the tweets that I’ve posted there over the past few days.
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If you see yourself in any of them, come on over and join the conversation.
@diaryofamom jess
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#youmightbeanautismparentif you find yourself celebrating and heartbroken – at the same time and for the exact same reason.
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#youmightbeanautismparentif you work and pray for the day that you can finally shut the hell up because your child can self-advocate.
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#YouMightBeAnAutismParentIf you’ve listened in vain for the hoofbeats and then remembered – we ARE the cavalry.
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#YouMightBeAnAutismParentIf you’ve asked a doctor if every degree came with a crystal ball, or just theirs.
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#YouMightBeAnAutismParentIf you’ve spent a lot of time debating ‘has autism’ vs ‘autistic’ and still feel comfortable with neither.
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#youmightbeanautismparentif you stop and think about the implications of anything you type here – other parents, indiv’s w autism, NT public
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#YouMightBeAnAutismParentIf you are desperately grateful for a community whose very existence you curse.
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#youmightbeanautismparentif letting your autistic child pick up the phone when telemarketers call just feels right.
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#youmightbeanautismparentif the “F word” in your house is FLEXIBLE.
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#youmightbeanautismparentif you’re pretty damn impressed with yourself for not crying until AFTER the meeting.
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#YouMightBeAnAutismParentIf you know every word to every (fill in the blank) movie ever made.
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#youmightbeanautismparentif you have lost your ability to stomach pretense in any form.
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#youmightbeanautismparentif you’re sitting alone w your kid in her room while the whole family is gathered downstairs for thanksgiving.
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#youmightbeanautismparentif you’re trying really hard to be thankful 2day, but your heart breaking for your kiddo is making it awfully tough
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Amended to add:
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jess
#YouMightBeAnAutismParentIf you simply can’t die. EVER.
jess
#YouMightBeAnAutismParentIf you’ve started to think that flapping and spinning is actually a pretty reasonable response to the world.
jess
#YouMightBeAnAutismParentIf You know full well that you ‘buy’ a good day with a tough evening. #kidcanonlyholdittogethersolong
jess
#YouMightBeAnAutismParentIf the next person who tells you that God doesn’t give you more than you can handle might want to duck.
jess
#YouMightBeAnAutismParentIf you’ve learned to stay eerily calm in the middle of a sh-tstorm.
jess
#YouMightBeAnAutismParentIf you’ve ever seriously considered taking a swig of your kid’s anxiety meds.
jess
#YouMightBeAnAutismParentIf you don’t *prioritize* so much as *triage*.
jess
#YouMightBeAnAutismParentIf you’ve learned that human suffering is not a competitive sport @autismville
jess
#YouMightBeAnAutismParentIf you try to get the dark black smudged eye liner under your eyes off, only to remember you’re not wearing makeup.
jess
#youmightbeanautismparentif you’re just like a regular parent – on steroids.
jess
#YouMightBeAnAutismParentIf you know that when you’ve met one person with autism, you’ve met *one* person with autism.
jess
#YouMightBeAnAutismParentIf you’re pretty sure your kid would never leave the house if given the choice.
jess
#YouMightBeAnAutismParentIf you + kiddo are in pjs @ 5:45 on fri night bc the planned family dinner out never made it out of the house.
jess
#YouMightBeAnAutismParentIf you’ve discovered that ‘family’ need not be defined by blood.
**
jess
#YouMightBeAnAutismParentIf when you call for someone across the house your child reacts as tho you’ve just seared her w a branding iron.
jess
#youmightbeanautismparentif you know details of (fill in the blank) that no one should know. #DoratheExplorer‘slastnameisMarquez.
jess
#youmightbeanautismparentif your child asks you where ‘your husband’ (who happens to be her daddy) is at any given time. Just us?
Amended again to add:
#youmightbeanautismparentif you ALWAYS have a strategy, a backup plan and a predetermined escape route.
jess
#youmightbeanautismparentif you’ve spent a lot of time on the other side of the door - wp.me/pNO8N-2Ft @spdbn
jess
#youmightbeanautismparentif some days you just don’t have the tools to make it better. And it hurts like hell.
jess
#youmightbeanautismparentif you get angry at times, but you know that it doesn’t serve you or your child to live there for long.
jess
#youmightbeanautismparentif .. the #CommunityBragPage makes ur heart soar with the POSSIBILITY of what r kids CAN do -wp.me/PNO8N-1
jess
#YouMightbeanautismparentif your definition of ‘funny’ has changed. A lot.
jess
#youmightbeanautismparentif you know that behavior IS communication.
jess
#YouMightBeAnAutismParentIf you barely glance at Twitter outside this hash tag cause a) you’re out of time and b) all the cool kids are here
jess
#YouMightBeAnAutismParentIf you know that ‘autistic people lack a sense of humor’ is also horsesh-t.squashedmom.com/2010/09/twinkl… @squashedmom
jess
#YouMightBeAnAutismParentIf when you say ‘there aren’t enough hours in a day’ you know for sure because you’re up for almost all of them.
jess
RT - @trishpip#youmightbeanautismparentif you have gained a lot of weight because you eat your stress. – (hell, I eat your stress too) lol
jess
#youmightbeanautismparentif your kid can’t tell you what happened an hour ago, but three years ago? #rememberseverydetail
jess
#YouMightBeAnAutismParentIf you know that autism is one word, but there is no one autism.
jess
#YouMightBeAnAutismParentIf you would give anything to crawl inside that beautiful mind and find out what’s going on in there.
jess
#YouMightBeAnAutismParentIf you would give anything and everything you have to sustain those fleeting moments of connection with your child.
jess
#YouMightBeAnAutismParentIf when the smoke alarm in your house gets triggered, so does Armageddon.
jess
#YouMightBeAnAutismParentIf you know that ‘People with #Autismlack empathy’ is horsesh-t.
jess
#youmightbeanautismparentif you’ve spent a lot of time on the other side of the door - wp.me/pNO8N-2Ft @spdbn
**
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And, not for nothin’, but I’ve got to share some of my all time favorite Diary mentions:
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@KristinMacchi:
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#youmightbeanautismparentif your morning news comes from @diaryofamom
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@MoniqueAscencio:
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#YouMightBeAnAutismParentIf you know who Brooke, Rhema & Bud (& a few others) are. & U cheer & cry 4 them as much as u do ur own child.
**
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If you’re not on Twitter yet, here’s your excuse. It’s easier than it looks, I swear. Just open an account HERE, follow me @diaryofamom and then click on the part of any recent tweet that says #youmaybeanautismparentif to get to all the tweets using that hash tag.
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See you there!
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November 23, 2011

an embarrassment of riches – still

Filed under: Uncategorized — by jess @ 6:15 am
Tags: , ,

The following was originally published on November 26, 2008. Except for the fact that the iPod Shuffle has long since been replaced by an iPad, it all holds true today. 

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Things I am thankful for (#s 1-13 of 17,846,319 and counting)

Katie’s laugh – not her polite little chuckle, the real one. The one that comes from somewhere deep and full of joy. The can’t breathe, smile wrapped around her head laugh. The laugh that summons the angels and leaves them lingering in the room long after it subsides.

Brooke’s belly laugh – so different from her sister’s, so very much her own. The laugh that starts with her shoulders and takes her whole body along for the ride. The laugh that sets her eyes on fire and whose sheer energy could launch a rocket ship and send it into orbit. The contagious laugh that leaves an electric happiness in its wake.

My husband, who loves me even when I am hardest to love. My partner. My best friend.

Our home – the home that happens to be in our house, but could be anywhere that we are together.

The fact that the things in life that I value the most don’t cost money.

All of the people who love and support and teach my children.

The parents, teachers and friends who take up the mantle of advocacy, who kick and scream and scratch and claw and pave the way for all of our children. Those who have come before, and those who will follow us.

Parents who teach their children compassion.

My beautiful Grandma – who has taught me that strength and femininity need not be mutually exclusive and that tenderness endures. Whose sense of humor and easy laugh I am so proud to share.

Our troops, who risk their lives each and every day in the name of duty. And their families, no less brave, fighting their own battles a world away.

Language - Brooke’s emerging ability to express herself, to ask for what she needs. And mine.

Our iPod shuffle – which has given my baby access to places she never could have gone without it. And when she sings along, heaven.

Autism. Yes, even that son of a b!tch autism – for touching my little girl more gently than it might have. For the gifts that it left behind, or at the least revealed. For forcing us to become so much more than we might have been. For teaching us compassion, tolerance, respect. For bringing together a community of people who can and have and will make the world more understanding.

You – who read the words I write. Who share this journey with me and who remind me that I am not alone. You who make the good times so much sweeter for the sharing and the tough times so much more bearable just for knowing that you’re there, waiting and willing to cheer the next victory or to send love when all else fails.

Yes, today and everyday, I am blessed beyond belief.

And I am so thankful.

Wishing you and yours a very Happy Thanksgiving.

November 22, 2011

waking up with a roar – sort of

Filed under: Uncategorized — by jess @ 6:20 am
Tags: , ,

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The nurse wants to chat as we walk through the labyrinth of hallways to the children’s recovery ward.

I don’t.

I do my best to make sounds that I think are appropriate as she rattles on. Periodic Mmm-Hmm’s and Uh-huh’s seem to satisfy her. Anything to keep her moving forward.

For God’s Sake, woman, HURRY!

As we approach recovery I see Brooke almost immediately. She is still out. A nurse is tending to an IV bag behind her and above her head.

That IV is attached to her somewhere. First thing she’s going to do is try to pull that thing out. She can’t see the nurse. No one behind her when she wakes up.

She looks awful. There is blood smeared across her cheek. Her chest heaves up and down as she sleeps. I reach out to touch her, but hesitate. I gently push her hair away from her face.

It’s 2001. Katie is just minutes old. I caress her face with the back of my fingertips. I don’t even realize yet that I’m afraid to use my whole hand. She is so tiny. So delicate. I am desperately afraid that I will break her.

I put my hand on Brooke’s head. She doesn’t move. I take a deep breath.

This is my girl. She’s stronger than anyone I know. She ain’t gonna break.

I stroke her hair as I ask the nurse to explain what’s going on.

Luau comes running in, Cheez-Its in hand. They were the only thing Brooke asked for all morning. They will be there for her when she’s ready.

I lean in over my baby and nuzzle her neck. The smell of the plastic from the oxygen mask is overwhelming. I stifle nausea.

My girl didn’t pluck her sensory issues from thin air.

But sitting by the side of her bed won’t be enough when she wakes up. She needs to KNOW that I am there. I put my cheek against hers and begin to sing softly in her ear.

Earlier that morning, we’d been singing the thinking song from Blue’s Clues. It made her happy every time. We’d sung it in the car on the way to the hospital. We’d sung it while sitting on the floor in the hallway outside reception before they opened. We’d sung it as we walked along the corridor from one holding area to the next.

Sit down in our thinking chair and think… think… thi-i-ink!
Cause when we use our minds; take a step at a time,
We can do anything … that we wanna do!

And each time, she’d ended it with a roar. Well, not really a roar, per se, but the word, ‘Roar’. It seems there was an episode in which Blue was pretending to be a lion. At the end of the song she said, “Roar.” At least I think that’s the story. Either way, we sang the song, she said, “Roar” at the end. You’re with me, right?

So there I am, singing Blue’s Clues to my sleeping Brooke, waiting and hoping that somehow, in some silly way, the song will help offer the same comfort that it had earlier in the morning. Something scripted, something familiar, something predictable in a world that is currently anything but.

And so I sing.

Sit down in our thinking chair and think… think… thi-i-ink!
Cause when we use our minds; take a step at a time,
We can do anything … that we wanna do!

As I finish, Little Miss opens her eyes and says, “Roar.”

Nurse Kathy turns around. “Did she just roar?”

Luau and I giggle.

And then she tries to tear out the IV.

Nurse Kathy quickly wraps her arm in a sleeve. Brooke is moving slowly. She doesn’t have it in her to fight. She closes her eyes and she’s out again.

We will repeat this process for the next two hours – rouse, struggle, sleep.

An infant is moved into the bed across the way. She is crying. Brooke sort of screams in response, but her voice is not hers. The noise that comes out is hoarse, scratchy, awful. Kathy looks her up and down trying to figure out what’s causing her distress.

Luau and I explain that it’s not physical – it’s the baby crying. We scramble to get the Teletubbies DVD up and running again. We hand her the player, this time with headphones. By the time she gets them on she is asleep again. But still, she mumbles her responses to the video. She ALWAYS repeats “Tubby Custard.” She ALWAYS follows the oboe sound with, “Po farted!”. She ALWAYS asks what they’re doing when they fall down. Even in her sleep, she adheres to the script. It’s hilarious and adorable and heartbreaking.

Nurse Kathy tells me that we’re getting a new friend in the next berth. As they wheel him in, our anesthesiologist looks over and thanks me. I’m confused. “You were a huge help in there, Mom,” she says. “Thank you.”

I stutter through a response. “Thank YOU all so much for your flexibility.” I say. “It made all the difference.”

The head nurse comes by. I say the same thing to her. She shrugs and heads off to her next patient.

The anesthesiologist is briefing Kathy on the little boy next door. She says, “Parents are very calm and supportive. Seem really normal.”

Oh dear Lord, what the hell did they tell her about me?

This lady has ISSUES. Nearly broke down the door trying to get to her kid. Brace yourself; this is gonna be a doozy.

I come really close to asking, but decide I don’t really want to know.

By 10:30, Kathy has taken to calling Brooke Sleeping Beauty. She lets us know that our stay at Hotel Children’s is over. After five hours in this place, I’m happy to get a move on, but I’m not convinced that Brooke’s going to get up. Kathy knows her stuff.

“Hey, my friend,” she says to Sleeping Beauty. “You want to go home?”

Brooke opens her eyes long enough to say, “Uh huh.”

As we start to pack up, Nurse Kathy asks Brooke if she’d like to keep the hospital issue slipper-socks that she wore through surgery. Brooke wiggles her feet, processes the question and says, “How about a no?” I fall in love with this child a thousand times a day.

She’s drifted off again, curled into me after changing back into her clothes. Kathy asks if I’d like to carry her or if we’d prefer a wheelchair with her on my lap. I tell her that I’m fine carrying her, but little Miss, sleeping or not, has another plan. A tiny voice emerges from my chest. “Wheelchair!”

She’s adamant about taking the wheelchair, so we do.

We leave the hospital and head out to the car with the bravest little girl I know, less four teeth. She is shivering and upset as I put her into the car, but she’ll make it through just fine. She’ll run a 103 fever later in the day and scare the stuffing out of both of her parents, but it will turn out to be nothing. She will ask the tooth fairy for things that she can’t possibly find on short notice, but she’ll be OK when said fairy delivers a soft stuffed bunny instead.

And through it all she will prove – yet again – that there is absolutely nothing in this world that she cannot do.

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Thank you so much to all of you who offered up your own experiences, advice, love, support and prayers. A special thanks to my PJs and particularly to my friend, Mom-NOS who was subjected to a series of knock-knock jokes and nonsense texts at 6am – I swear I thought she was texting Luau. And no, I’m not sure why knock knock / who’s there / damoon / damoon who / damoon is eating snotty balls is funny, but let me tell you, it helped us get through some serious stuff, so thank you. :)

November 21, 2011

outpatient surgery, autism style

Filed under: Uncategorized — by jess @ 6:36 am
Tags: , ,

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Friday, 5:30 am

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Brooke and I have checked into the Day Surgery unit at Children’s Hospital for a 7:30 procedure. She needs a total of four baby teeth pulled and there’s no possibility of doing it without anesthesia. I’m terrified, but holding it together miraculously well, if I don’t say so myself. Luau will be along after getting Katie ready and over to a friend’s house for school.

We’ve moved ever so slowly from the reception area to the first waiting room to the second waiting room and now to the official inside holding area. We’ve already educated the first nurse who came over and read quickly through her chart, scanning her finger quickly over PDD-NOS, skipping it and only reading aloud ADHD.

She looked shocked when she asked if there was anything else she should know and I said, “No, the autism really is the biggest issue.” She went back and read it again, still confused.

“PDD-NOS stands for Pervasive Development Disorder,” I explained. “It’s a form of autism.”

“Oh, yes, she said,” attempting to assert her familiarity by inadvertently doing precisely the opposite, “Not Origin Specific.”

I didn’t correct her, but instead explained that anxiety and sensory issues would be our biggest challenges that morning. We talked a little bit about what that meant – mostly just put us in the quietest place possible and don’t pick her up or touch her without warning.

As the morning wears on, we find that Luau’s long preparatory conversation with the hospital was largely useless. I make mental notes for next time: Don’t say PDD, say Autism. Forget about ADHD, they need to know about Pervasive Anxiety. Know that they’re full of crap – and it’s for the best – when they say that The Child Life Specialist will ‘meet you at the door and guide you through the process’. When she shows up more than an hour after our arrival to find Brooke in her hospital jammies calmly watching her favorite Teletubbies DVD, her response is to sing-song a loud hello and ask if Brooke would like to make Thanksgiving crafts with her. Um, no.

As the holding area begins to fill up with children, it gets tougher. A toddler cries and Brooke shouts in response. I join her on the gurney and turn up the volume on the DVD player. Together, we watch Laa-Laa and Po, Tinky Winky and Dipsy. I usually can’t stand those guys, but I might just be coming around.

The anesthesiologist comes over to talk about what he has planned. He is patient and kind. He ensures that I understand everything that he says; he asks my opinion; listens to my responses and is extremely receptive to my questions and concerns.

Together, we decide that it will be necessary to give Brooke a sedative before beginning anything else. I ask him to bring a detached mask that we can play with while we wait so that I can at least attempt to desensitize her to the idea of putting it on her face. I express my fears about her waking up agitated or panicked. I tell him that come Hell or high water, I do not want her waking up without me. He promises they will come get me as soon as it is safe to do so and assures me that he’ll have an anti-anxiety ready to administer at the first sign of distress.

The rest of the team begins to assemble. The doctor comes over to check in with us. A second anesthesiologist brings the mask and asks Brooke if she’d like it filled with a yummy smell. Brooke half-heartedly chooses strawberry. She just wants to watch her show.

Her tension level is rising. Too many people. Too many questions. Danger Will Robinson.

I begin to interject. “I don’t mean to answer for her,” I say, “but she’s calm right now. Engaging her is causing her more stress than not.”

The second anesthesiologist smiles at me. “Don’t apologize,” she says, “That’s perfect. Exactly what we need to know.” She backs off and Brooke happily rejoins the Teletubbies.

I’m not convinced that the sedative is working. As the time draws nearer, she looks as wide awake as she did before. She wants no part of the mask. She’ll hold it, but putting it on her face is a different story. I am braced for disaster.

It is the head nurse who speaks up. “Mom,” she says, “we’re going to do things a little differently here. You stay right where you are, OK? You’re going to come in with us just like this.”

Luau points out that I have yet to put on the scrubs that she’d given me twenty minutes earlier. She makes it abundantly clear that she couldn’t care less. She’s not going to upset the apple cart just to get me into different pants. I put the lovely paper hat thingy over my hair and we’re off.

We’re rolling through the hallways, Brooke in my arms, watching her beloved Tubbies. I am holding my girl, smiling up at doctors and panicked looking parents as we go, doing my best to pretend that this is all normal – just another day. I want desperately to take my girl and run.

When we get into the operating room, Brooke is startled by the stark white light. “I know, baby,” I say. “that’s a really bright light.” A nurse immediately flips it on the opposite direction and then switches it off. The head nurse looks at me. “This isn’t the way we typically do things around here, Mom, but we’re going to do whatever’s best for our girl, OK?”

If I weren’t on a gurney, I would hug her.

The next thing I know, I am holding the mask on my baby girl’s face. She tries to swipe it away, but I hold firm and tell her that she needs to keep it on her face for just another minute. I talk about the movie, still playing. “Look, baby,” I say, “It’s time for Tubby Bye Byes.” Oh God. There’s no way that she’ll be out in time. “Brooke,” I explain, “when the Tubbies all say goodbye, we’ll start the show again, OK?”

As the freaky baby sun guy begins to giggle, Brooke is out. I’m shocked. It happened so fast. The team asks me to lie back on the gurney so that they can pick her up and over me and transfer her onto the gurney set up for the procedure. Her body is limp and her eyes half-open. It’s wrong. It’s all I can do not to throw myself on her. Mama bear is struggling.

I kiss her on the cheek and a nurse I haven’t seen until now whisks me out into the hallway. She walks me all the way back to Luau, pushing me hard through the blur of hallway. I don’t resist. I never would have found my way back on my own.

Luau and I move back out into the reception room where we will wait for word that she is out of the OR.

I can’t breathe.

It’s 2003 and I have just given birth. My girl is being held back because her temperature is too low. I need my baby. Please, for the love of all things holy, just bring me my baby. She needs me. Please. Please bring me my baby. I can feel the itch of the morphine wearing off. Why aren’t they bringing my baby?

I walk out into the hallway and push my back against the wall. Tears stream down my face. I kept it together as long as I could.

Luau goes to talk to the nurses again. They need to know. Do not let her wake up without her Mama. She won’t have the foggiest idea what’s going on. I have to be there when she wakes up.

Luau brings me back into the waiting room. He reminds me that anesthesiologists have said that no one remembers that time when they first emerge, so we don’t have to worry – that even if it’s hard, she won’t remember a thing. He tells me again that when he had his wisdom teeth out he did Kung Fu in the waiting room.

I try to keep my voice even, but I know it sounds harsh. “They have no idea what people remember or don’t, Luau. They barely even understand how this stuff works. And what you remember or don’t is totally irrelevant. Brooke’s brain works differently that yours or mine or anyone else’s and heaven knows we have no idea what she is recording or how she will or won’t process it later.”

He leaves it alone. “Fair enough,” he says. He offers a cup of coffee. I just can’t. He heads down to the lobby shop to make sure we have something for Brooke to eat when she wakes up.

The nurse calls me. “She’s emerged from the anesthesia but she’s still sound asleep. Do you want to wait for your husband to come back up?”

I nearly drag her down the hall. “NO. Please bring him to us as soon as he comes back,” I say. “I’ll text him as we walk so he knows. But if my girl is waking up, I’m not waiting for anything.”

… to be continued

November 16, 2011

thank you, mr mark

Filed under: Uncategorized — by jess @ 6:25 am
Tags: , ,

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Strange is our situation here upon earth. Each of us comes for a short visit, not knowing why, yet sometimes seeming to divine a purpose. From the standpoint of daily life, however, there is one thing we do know: That we are here for the sake of others – for the countless unknown souls with whose fate we are connected by a bond of sympathy. Many times a day, I realize how much my outer and inner life is built upon the labors of people, both living and dead, and how earnestly I must exert myself in order to give in return as much as I have received.

~ Albert Einstein

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Just after Brooke and I returned from our trip to New York, I received the following note on Diary’s Facebook page.

Dear Diary of a Mom….

Greetings from Sydney, Australia.

I have been reading your blog for several months. I am blown away. I have been addicted to Godspell since I was a child. I’m now 43. I understand your daughters obsession. The show was responsible for me having a career in this business we call ‘show’. I have been working as a performer for 34 years now, having started professionally at the age of 9.

I have a large collection of Godspell ephemera from all over the world that I have been collecting for 30 years. I would like to send a gift to your daughter from my collection…to spread it to someone else who would appreciate it. Your story (particularly the latest episodes from the revival) have touched me so deeply. I have a few items in my collection that I think your daughter might enjoy. I’m not asking for anything in return … you have given me more than I could ever want already by sharing your beautiful story.

I hope to hear from you.

May All Good Gifts be yours!

Mark

I didn’t know what to say. Mark and I connected and he told me more – much more in fact – of his story.

His life could not be more different from Brooke’s. He lives across the globe. He grew up in a very different time and in a very different place than my girl. They should, for all intents and purposes, have nothing in common.

Yet, as it does for Brooke, something about this show spoke – and continues to speak – to him. It quite literally changed the course of his life, and helped, in dramatic fashion, to shape who he has become.

Last night, a package arrived from Australia. It contained a set of ‘window cards’ that had been used as advertisements in theaters for the original 1973 Godspell movie.

They were the most perfect gift imaginable.

Brooke was in heaven. And so was her Mama.

After a long, hard day, there was nothing better than this.

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Thank you, Mr. Mark.

I do not have the words to tell you how much this truly means.

November 15, 2011

somebody get my agent on the phone

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On Sunday night, I posted the following on Diary’s Facebook page ~

“OK, so vanity would normally keep me from sharing this publicly, but I decided we all could use the laugh and the ‘OMG, me too’ realization that *many* of us with little (and not so little!) sensory seekers often serve as human jungle gyms. Earlier this evening, with anxiety running high, Little Miss attached herself to mama – literally. This is how she was watching TV.”

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7,792 views and 169 responses later, it was obvious that I was not the only one who has ever worn a child as a scarf – er, head wrap.

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After taking a break for dinner – which Brooke (mostly) managed to sit through in her own seat –  she returned to her role as a koala.

But this time, instead of clinging to Mama, she wrapped herself around her Daddy.

Which looked like this ~

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Now listen, I know that parenting is not a contest – particularly between spouses.

Because clearly, that would be unhealthy.

Not to mention REALLY immature.

But seriously.

Let’s review, shall we?

Me ~

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Him ~

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I am SO not winning.

(Ya know, if it were a contest.)

(Which it’s not.)

But still.

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Ed Note: If you’re new to Diary, welcome.

(The following was originally published on Oct 7, 2011 and updated this morning.) 

As my dear friend Mom-NOS would say, I welcome you to this, my virtual living room. I think you’ll find it’s a pretty comfortable place. We’re not much for standing on ceremony around here, so kick off your shoes, let the dogs up on the couches and settle in for a while. I’ll get the coffee brewing and we can get to know one another. 

If you’d like to explore, by all means do. You’ve got the run of the place. If you’d prefer the nickel tour, the following links (in blue) might be some good places to start. 

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If you have a child with a disability, recently diagnosed or otherwise. Welcome to the Club.

If your kid is annoying the crap out of you. Mom, Watch This.

If you are struggling. Avalanche.

If you want to learn more about the autism community. My Trip to the White House and Autism Street.

If you want to know how autism and Sensory Processing Disorder affect a family. No More than a Hiccup and The Donut Shop.

If you want to know why I think disclosure is so important – and why the ‘label’ itself may be the ticket to community for people with autism. The Conversation Revisited.

If you want to know how connections can be made in the unlikeliest of places. Babe.

If you want to understand what autism is. Hairdryer Kid in a Toaster Brain World by Mom-NOS.

If you want to know why my eight year-old is obsessed with a 1970′s movie. Godspell Part One

If you want to know what happened when I took her to New York to see the Broadway Revival of said 1970′s movie. The Harvest Part Two

If you want to know why I really want you to read this: Veteran’s Day.

If you want to know where your money goes when you donate to autism research. What I heard.

If you want to know why perception matters. MIT.

If you want to know why the president needs to light the White House blue in April. This is My Autism.

If you want to know how loving someone with autism changes you. Real.

If you want to know why I’d prefer you not use the R word. That’s Retarded.

If you think autistic people lack empathy. Autistic People Lack Empathy – Except Not.

If you want to get to know some of my favorite adults on the spectrum (not a one of whom lacks empathy, for the record). Look Me in the Eye, Incipient Turvy and Aspie from Maine.

If you want to learn about autism self-advocacy. ASAN

If you want to know how much I love my girls. I See the Moon, Nine Years Ago Tomorrow and All You Need to Know. (Or really any post on the whole dang blog.)

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Oh geez. I guess the nickel tour turned into a quarter, huh? Sorry about that. It’s just that, well, it’s a pretty big house. So what say I leave you to it? Coffee’s almost up. I’ll grab the cups. In the meantime, I really hope you’ll make yourself at home. 

November 14, 2011

the journey back to happy, alternatively titled ‘the most self-indulgent post in the history of the world’

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I haven’t a clue as to how my story will end. But that’s all right. When you set out on a journey and night covers the road, you don’t conclude that the road has vanished. And how else could we discover the stars?

~ Nancy Willard

The longest journey a man must take is the eighteen inches from his head to his heart.

~ Proverb


Yesterday, I needed something. Well, I needed a lot of things really, but the thing I needed more than any other was a reminder that Happy is a lot closer than it’s felt lately. That no matter how distant it may seem, it’s really, truly very close at hand.

It may well be buried under a toxic, steaming pile of Desperately Overwhelmed or weighed down by a big ole lump of Barely Keeping It Together, but nonetheless, it’s here. It’s right here.

And if I can widen my lens just the slightest bit, I know I’ll see it. Because it’s inside every single interaction – from the most mundane to the utterly sublime – with the people who I love more than anything in this world.

So I went to my computer and began looking at the photographs that we took with Kathleen. And I looked carefully. Really carefully.

I looked beyond the sun’s glowing light, out over the beach. and even, with a great deal of effort managed to pull my gaze past the breathtaking and ethereal beauty of my girls (sorry, but false modesty be damned; we’re talking about my kids) to see the real magic that Kathleen had captured in those photos.

And I saw that if you really look carefully, there’s one thing that you can’t miss in every single picture that she took.

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Do you see it?

The one thing that Kathleen captured in every single image?

LOVE

A love so strong that it makes everything else possible.

Even – no, especially – the journey back to the JOY that is so obvious in those very same pictures.

Thank you, Kathleen. A million times, thank you.

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Photos by Kathleen Connerton

kathleen@connertonphotography.com

http://www.ConnertonPhotography.com

401-662-9728

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All images are the exclusive property of Connerton Photography and Diary of a Mom and are protected under the United States and International Copyright laws.

The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jess at Diary of a Mom.

In other words, keep your mitts off my pics. 

© 2008 – 2011 Diary of a Mom.

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Ed Note: Just to be clear, I do not receive nor have I received any kind of promotional consideration from Kathleen, Connerton Photography nor anyone else – ever. I’m not saying I’m not open to it (Jimmy Choo, I’m lookin’ at you) but it’s just not what Diary is about. 

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