Articles Tagged diary of a mom

28 Minutes

April 5, 2012 by in Autism, Behavior, SPD, Victories with 4 Comments

Diary of a Mom
Big community building event at the girls’ school tonight. Cover me, Dan O, we’re going in.

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Diary of a Mom
We lasted 28 minutes. And by God I’m calling every one of them a victory. #HolyChaosBatman

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Diary of a Mom
dear NT mom selling pizza at the school event tonight, i can’t possibly tell you how much your words meant to me. and i’m so sorry that i didn’t stick around to really tell you that, but you see, i had to follow my girl because in a place like that if she can’t see me, it gets .. well, yeah. but please know this – when you said to me, ‘what a difference a year makes’ while smiling warmly at my girl and then we shared that moment of remembering that yeah, last year she was sort of (ok, completely) a disaster at this thing and *this* year, she was managing – like really, really managing – the chaos and well, THEN when you smiled at me and said, ‘i just LOVE her. she’s just so awesome,’ well, you damn near did me in, lady. and as much as i turned away because i needed to follow brooke, i also turned away because if i didn’t, i was going to be blubbering all over her pizza. so, i guess what i’m trying to say is — THANK YOU.

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“I feel like I messed up everything.”

~ Brooke, on the way out of the festival, using words borrowed from Maria in Bob and Marie Bake Cookies

*

International Festival, last night

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The moment we walked into the school, I knew. Not only was this going to be hard, it was going to be damn near impossible.

They had moved some of the tables into the entryway. The US, Canada, Brazil – all squeezed into the tight space of the front hall. Brooke blew right by them. She was on a mission.

We’d prepped her before we’d left the house.

“Remember the passports, baby? We’ll get a passport just like last year, and we can get it stamped at each country we visit!”

Last year we’d gotten three out of some thirty some-odd stamps, but she remembered. Of course she remembered.

It wasn’t until we got to the check-in desk that we discovered that the passports and stamps had gone the way of the wagon wheel – replaced this year by maps. And pencils. And a very confusing system in which we were to mark down the countries we’d visited according to a legend that provided a number that we were then supposed to .. OK, yeah, we politely declined the map.

“We will go to the gym!” Brooke announced. I told Luau and Katie that I’d follow her and they should go on their way.

The gym was full. Really full. Hanging out in the middle of a rugby scrum full. But Brooke walked in.

We walked the perimeter of the gym, checking out the tables from each country. Well, sort of. I was just along for the ride, but I’m fairly certain that we were looking for only the following: Japan (they’d had sushi last year), China (they’d had toys last year) Israel (they’d had oranges last year) and India. That last one I can’t explain except that she made it quite clear that we were looking for it. Once we found it, she shrugged and walked away.

She made a beeline for Japan. There wasn’t anything there that seemed of particular interest to her, but the lady manning the table got a big kick out of the little girl who came over with her arm outstretched, pointed at her and loudly said, “Konnichiwa!”

In China, she grabbed for a dumpling before I could stop her. I’d already downed a piece of Bavarian poundcake, a square of Dutch cheese and a Greek cookie because she’d decided to ‘taste’ them at the various tables – meaning that she’d picked them up, put the teeniest, tiniest possible part of her tongue on the teeniest, tiniest corner of the item and then put it right back down again. I was on patrol, but in China I wasn’t quick enough.

I prompted her to thank the nice lady who smiled as she took the dumpling. And she did. By saying, “Xie Xie!”

When the nice lady responded with, “You’re welcome,” my girl muttered, “Bu Keqi,” cause – duh – that’s how you say, “you’re welcome” in Chinese.

Yes, really.

I would therefore like to take this time to offer my heart-felt thanks to both Kai Lan and Dora.

After about four tables, Brooke had had enough. I suggested some pizza and we headed out into the hallway, where we encountered the lady in the quote at the top of the page. I’m telling you, folks, she almost did me in.

We ate our pizza in the same quiet hallway as last year. But this year we were there because it seemed like the best place to eat our pizza, not because we were holding onto the last piece of driftwood we could find in the sea, making one last-ditch effort not to drown – kinda like last year.

After dropping the pizza face-down on the floor finishing up, Brooke took us back into the gym, where everyone, it seemed, had a red, white and blue pinwheel from the US. She decided that she needed to have one too.

We walked back out to the front hallway. It was crazy. A show was letting out of the auditorium and people were everywhere. They squeezed by, laughing and squealing and calling out for each other. Brooke’s entire body was tense. I waited for the inevitable scream. It didn’t come.

“Mom, I feel scared.”

That’s what she said.

“Mom, I feel scared.”

I thought of the pizza mom. “What a difference a year makes.”

Indeed.

Brooke reached up and pressed her hands into my back and belly, squeezing as hard as she could. It’s what she does when she’s overwhelmed. She pulled my face down and gave me a kiss. Not the affectionate kind, the panicked, eyes-wide kind where she mushes her face into mine. They hurt, but they help.

I assured her that I’d hold onto her. I squeezed her shoulders from behind, hoping the pressure might help.

It wasn’t enough.

She turned around and pointed in the opposite direction. “We would go to the library,” she said.

I asked her if she wanted me to try to get a pinwheel before we bailed.

“No,” she said, ” I feel scared.”

We lasted about ten more minutes. The library was closed, so we took a little walk around. Kids were running and yelling everywhere. Two boys who couldn’t have been older than six rolled around in the middle of the floor together, wrestling. Three more boys ran by at top speed, just missing them. The poor custodian looked like he was going to tear his hair out. “Where are their parents?” I wondered aloud. He looked at me like I had three heads. Yup, got it.

We tried the gym again, but Brooke was done. She simply said, “I’m ready to go home.”

Twenty eight minutes.

No tears. No screaming. Just words.

I declared victory as we walked out into the night. I told her I thought she’d done great.

We walked around the corner and up the hill to the car.

And on the way she said, “I feel like I messed up everything.”

I know the line. It’s from Bob and Maria, the series of stories that her speech therapists used to use for social prags until we discovered that she was mimicking the How Not To Be a Friend examples from the books. Oops.

There was no question that the line was a script. Even if I hadn’t recognized it as such (and this wasn’t one I was going to miss given the frequency with which she says it), her prosody gave it away. And scripts – or at least the words in them – can be easy to dismiss because, well, they’re scripts after all. But something gave me pause.

“Oh baby,” I said, “You didn’t mess anything up at all. Why would you say that?”

Her answer stopped me in my tracks.

“Because I had to go home.”

We stopped walking and I grabbed my girl’s shoulders.

“Oh, honey, you did not mess anything up at all! Just the opposite. You were amazing tonight. And you know what?”

“What?”

“I’m really proud of you.”

“You are?”

“I am. Baby, you told me what you needed tonight. That place was really overwhelming, wasn’t it?”

She knows the word. We use it a lot these days.

“Uh huh.”

“But you handled it, didn’t you? And when you felt scared, did you scream?”

“No.”

“Did you cry?”

“No.”

“That’s right, You used your words to tell me how you felt and what you needed. And that makes me feel really, really proud.”

“It does?”

“Yup.”

“So proud?”

“Yup.”

“How so proud?”

“So, so, SO proud.”

“How how how proud?”

“So, so, so proud.”

And that was how we spent the ride home, with a whole lot of how how hows and even more so so sos.

So to recap -

My kid rocks. Other people see it too. Dora and Kai Lan are educational. Dutch cheese, Greek cookies and Bavarian poundcake are not a great combination. People who leave their five and six year-olds to fend for themselves at huge events are likely to find them rolling around on the floor. Custodians are underpaid. Scripts are not always what they seem. My kid rocks.


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fair

Sometimes, it’s just hard.

When I can’t fix it.

When my baby hurts.

When the world is too bright, too loud, too big, too scary – just too MUCH.

I sit on the floor outside the theater holding my crying girl. I swear I’d done everything I could think of to prepare. But neither the noise canceling headphones nor the popcorn and gummy bears nor all the prep work in the world could get us through.

There was no epic meltdown. No kicking, screaming tantrum. Instead there was the heartbreaking, silent cry of a little girl whose sensory system was under attack. She climbed onto me, curled her little arms around my neck, and said “hug, hug, hug,” over and over again.

I couldn’t make it better. I couldn’t make it easier. It was just too much for her to take. All I could do was get us the hell out of there.

There were so many reasons that it should have worked. I’m too tired to detail them, but trust me – this should have been the one.

We walk the long corridor together, side by side.

“Jesus is my favorite Godspell friend.”

“Yes, honey, I know.”

“I like Zoe better than Elmo.”

“I know, honey.”

“They live on Sesame Street.”

“Yes, baby girl, they do.”

The scripts – the comfort of sameness. Order out of chaos.

I suggest going back in to try again. Her mouth opens into a tortured ‘O’. The tears stream down her little cheeks again.

We sit down on the floor to the side of the door and listen. How many times have we been here – just outside a door – listening to the world on the other side? Birthday parties, movies, kids’ shows of all shapes and sizes – too many to count.

A mother chases a toddler out the door – he’s no bigger than a minute. She and I exchange a smile. Brooke doesn’t notice.

As she scrolls through the home videos on my phone, my mind wanders back to the moments before the movie. As we waited for the slowest concession stand worker in the history of the world to finish her chat with her co-worker and scoop some popcorn, Brooke had done jumping jacks. I thought it was adorable. Someone else did not.

“Brooke, what are you doing?” I asked.

“Jumping jacks!” she shouted back.

Ask a silly question ..

I didn’t stifle my giggle.

Katie looked up at me with pleading eyes. “Mama, she’s EMBARRASSING us in public again.”

I’d fought yet again with that all-too-common tornado’s brew of emotion – empathy for one child stirred into a healthy dose of anger in defense of the other – how dare she – and yet, of course, she’s eight. Of course.

The movie finally ends and we watch the parade of people file out. I search the crowd for Katie and Julie. Smiling four and five year-olds chatter on about how cool the Chipmunks were – I’m sure I see far more of them than there really are, but Jesus – enough.

An hour later, my girl is still not herself. I beat myself up for trying to bring her somewhere that can’t help but overload her system.

Three hours later I am still sitting up in bed. I want to scream. Or throw something. I want to know why it has to be so hard –  why the simplest things – like a movie – have to be out of reach. Why every little thing has to be such a PROCESS for my girl. Why a theater full of kids and their parents can sit happily through a movie without having to plan for every possible contingency. Why my baby’s life has to be HARD. I want to know WHY. She shouldn’t have to struggle. She simply doesn’t deserve hard.

Once in a while Katie will rebel against a ‘no’ with, “It’s not fair.” It drives me crazy. My response is the same every time. “What’s not fair is that there are children in the world without enough to eat. THAT’S not fair.”

But all I can think as I sit in the dark is, “It’s not fair.” It’s not fair that our children have to hurt disproportionately. It’s not fair that my nearly seven year-old can’t go to a God-damn movie.

It’s just not fair.


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the donut shop

October 3, 2011 in Autism, Behavior, Parenting, Siblings, SPD with 12 Comments

* I couldn’t believe she wanted to hear it again. As a matter of fact, she tried to convince me that I’d never told any of it to her before, which certainly wasn’t the case.

no more than a hiccup

July 12, 2011 in Anxiety, Autism, Avoiders, Siblings, SPD with 26 Comments

** i sit on the floor of brooke’s room her head is cradled in my lap – her long, lean body sandwiched between my outstretched legs i look at her upside down, searching her face

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