winnie the pooh

 

“Is Winnie the Pooh a boy or a girl?” she asked as she ran.

The first few times we didn’t make the connection. Kendall would often ask our gender or the gender of a favorite character as a way of interacting with us. She’d ask again and again, so it wasn’t so out of the ordinary as to get our attention.

“Is Winnie the Pooh a boy or a girl?”

“A boy, honey.”

And off she would run, seemingly satisfied.

“Kenz, where ya goin, love?”

“I am going to the potty!” she would yell over her shoulder as she did just that.

She didn’t ask every time she went, mind you. Maybe one out of every four or five times or so. Hmm.

I never claimed we were very bright, but eventually we catch on. Not much of a stretch to figure out the association when you finally put your mind to it. Winnie the Pooh.

Need a minute? I’ll just go grab my coffee. Let me know when you’re ready and I’ll carry on.

You with me now? Heading to the bathroom … Winnie the POOH … Uh huh.

We had a lovely visit with my aunt, uncle, cousins and my dear grandmother a couple of weeks ago. The kids were all playing downstairs with my cousin when Kendall came bounding up the stairs and burst through the door. She nearly mowed down my poor grandma on her way to the bathroom. But, since she had encountered someone – the game was now on. With a palpable sense of urgency she looked up at her great-grandma and asked, “Is Winnie the Pooh a boy or a girl?”

Grandma was taken by surprise. “What’s that, sweetheart? Is who a what?”

With pleading eyes, Kendall repeated her question.

“IsWinniethePoohaboyoragirl??????”

“Hmm,” Grandma began thoughtfully. “Well, let me see, I have to picture Winnie the Pooh. A girl, my darling? Is Winnie a girl?”

Oh dear. Poor Kendall looked as though she might pass out. I nudged Grandma as gently as I could. “Grandma, Winnie is a boy. Please just tell her Winnie is a boy.”

“Hmm, OK, dear, Winnie is a boy, I guess I was …”

Kendall didn’t hear another word. The bathroom door was already closed behind her.

.

too small

 

School is coming.

I can smell it in the air. 

I can see it in the gentle creases on my forehead that don’t seem to go away. I see it in the dark circles that have settled in under my eyes. I hear it in my voice as it tightens and I feel it in my temper as it shortens with the girls. I watch it go into my mouth as I futilely try to feed my fear with sugar and salt.

I see it on my computer screen - as the volume of e-mails and entreaties and meetings and lectures and panicked questions skyrockets exponentially.

We meet, we talk, we plot, we plan, we organize. We gather documentation from doctors and therapists and former teachers. We stress and cry and scream and wonder if we are doing enough. Is that just me? It can’t just be me.

We make plans to educate our children’s classmates. How can my friend avoid a situation like last year, when her son was terrorized by unrelenting bullies? We search for books and when we don’t find the right ones we write our own. We steel ourselves to talk to a new group of kids. Don’t cry. Stay strong.

We write letters and speeches that we hope to God will help educate our fellow parents. Hi, my name is Jess. I am the elementary school liaison to the town-wide Special Ed Parents Advisory Council and the parent of a child with special needs. We hope beyond hope that someone will hear us. I need your help.

We drag our soapboxes behind us like Linus and his blanket. It just takes one friend; one kid who will move from bystander to advocate. Just one. If we talk to all of them, we’ll find the one.

We support one another here in this ad-hoc family of ours.  A friend told us the other day that when he and his wife told their friends and family about their son’s diagnosis, they lost people. People they have yet to speak to again. How can this be? How? HOW?  I didn’t realize how blessed we are by our family’s reaction. What can we do to help, they asked. How could it be any other way? HOW? For God’s sake; I don’t get it.

I feel too small. My arms don’t reach. My voice isn’t loud enough. The ignorance is too big. How can people not GET this? How is it not obvious? My friend, Drama  said it perfectly yesterday. Sometimes it feels like fighting racism in the sixties. Yes! That’s it. The civil rights activists must have asked the question. How do people not GET this? Doesn’t it seem obvious that people are people? Like segregated water fountains, shunning a friend or family member because their child has autism is UNCONSCIONABLE.

How do I protect my baby from ignorance that big? How do I keep her safe and happy and learning and growing? How do I make people understand? How do I make sure that friends’ kids are never shunned again? 1 in 150 – they’re going to HAVE to understand. How do we extract the fear and the shame from the word ‘autism’? If I say it enough, can I reclaim it? Can I make people understand? Autism, Autism, Autism. Is it working yet?

Sometimes I just feel too damn small.

groundhog day

At least once a day, every single day since about March, we have had some version of the following conversation.

“I’m going to be Tasha for Halloween.”

“I know, baby.”

“I’m going to be Tasha for Halloween.”

“Yes, sweetheart.”

“She is a girl.”

“Yes, she is.”

“I’m going to be Tasha for Halloween.”

“I know, honey.

I will be Tasha for Halloween and Darby will be Hannah Montana.”

“No I’m NOT, Kendall. I don’t want to be Hannah Montana for Halloween. Mama, could you please make her stop?”

“I know Darb. Please don’t get upset, baby. You’ll be whatever you want to be for Halloween, OK?”

“Darby, what are YOU going to be for Halloween?”

“I DON’T KNOW, KENDALL!!!”

“Kenz, honey, most people don’t know what they are going to be for Halloween in ___ (Insert appropriate month starting with March.”

“I’m going to be Tasha for Halloween.”

“Yes, honey.” So you’ve said.

“She is a girl.”

“Yes, she is.”

“I’m going to be her.”

“Yes you are.”

 

ed note – I have no idea how she manages it, but unbelievably, she’s done it again. There are three Backyardigan character costumes available for purchase – Tyrone, Uniqua and Pablo. There is no Tasha costume. Hoo-flippiin-ray. Her record is intact. My child never ceases to amaze me.

just one person

I will not play at tug o’ war

I’d rather play at hug o’ war

Where everyone hugs

Instead of tugs

~Shel Silverstein

After dinner on Friday night, the girls convinced me to take them across the street for ice cream. Truth be told, there wasn’t much convincing to do, but the convincing part has become just as much a tradition as the actually going part.

The ice cream shop is always a crap shoot. It is a long, narrow rectangle with a divider down the middle that manages the line when it gets long, splitting it in half and doubling it back on itself. When the shop gets busy, it turns into a very crowded and dangerously noisy place. We typically hit it early enough to be safe and then eat our ice cream at one of the small outside tables, avoiding the crowd. The evening had gotten away from us a bit, however (making Winnie sandwiches and all) and we arrived far later than we normally would. It certainly wasn’t at its worst, but it was filling up. Worse, it had rained all day and the outside tables were soaked.

We got on line and I prayed. Admittedly, that’s not the best strategy in an immediate sense, but it had been a looong day and I was pretty well tapped. I handed Kendall the Dr Seuss book that I had in my bag in hopes of distracting her. I didn’t think to give her the iPod that was right also in the bag. As a matter of fact I didn’t remember it was there until right now. Um, yeah. Moving on.

As the noise level rose, so went Kenz’s anxiety. As she bounced off the walls (and into the people around us), I tried everything. OK, right – except the iPod. Drop it, will you please? I’ll give you another tactical error to focus on in 5,4,3,2,1 …

As we got to the counter I noticed a sign advertising a new addition to the shop’s menu – Smoothies! Kendall’s LOVES strawberry-banana smoothies, so I drew her attention to the sign. I asked if that sounded yummy. “Yes it does!” she said. I asked if she’d like to get one instead of her ice cream. She furrowed her little brow and looked at me through squinted eyes.

“Kendall,” I began again, “would you like to get a smoothie instead of ice cream?”

“I would get BOTH,” she answered, proving she is her mother’s daughter.

“Sweetheart, we can’t get both, You can choose one. You can get a smoothie OR you can get ice cream. Which one would you like?”

“BOTH!” she said again. OK, shouted.

“Honey ..,” was all I could get out before realizing that the camel was long buried in a stack of straw. A toddler yelled, “Daaaaaaaddy!” and we were done for. Kendall shrieked sharply and began to cry.

Behind us on line, an older lady smiled warmly. Completely unfazed by the fact that Kendall was now crying loudly, she crouched down in front of her and gave her a big smile. She asked about the book she was clutching. She didn’t seem to mind that Kendall wasn’t answering her. Her tone remained sweet and even. She stood up as the line moved a bit, still smiling.

That smile was no less than everything – Acceptance, Compassion, Understanding, Pure, simple kindness.

Trying to wrangle Kendall and continue shuffling us forward with the line,  I managed to mouth ‘thank you’. I wanted to say much more.

The line moved along painfully slowly. Kendall was struggling. When we finally reached the counter, I copped out and ordered a smoothie for Kendall and the ice cream for myself (shuddup). As I was paying, Kendall dropped her book and shouted in frustration. The same woman reached down and picked up the book. She held it out and when Kendall didn’t reach for it, she waited patiently for me to fumble with the ice cream and the change and then handed it to me. Again, I thanked her.

As we settled down and tucked into our ice creams (and smoothie) I saw the lady and her friends walk by the window. I told the girls I’d be back in a flash and I poked my head out the door of the shop. I had to say something. I had to explain to this woman how much she had given to me – to Kendall.

They were further along the sidewalk than I’d thought, having made significant progress while I told the girls that I had to step outside. I awkwardly yelled down the sidewalk, “Excuse me, Ma’am?” I had to yell again to get her attention, but I wouldn’t walk away from the girls, so it was all I could think to do.

I motioned her toward me, trying to look as little like an unhinged stalker as I could. As she got closer, I explained why I was tethered to the door, but that I really needed to tell her something. She looked understandably confused.

With one eye on the girls, who were contendedly slurping and eating I said, “I have all of a second and a half to say this because I have to get back inside, but I neeeded you to know something. My younger daughter has autism and moments like the one in there can either be disastrous or they can be just fine. And really, it can all come down to just one person’s reaction.” I was choking up, the dam threatening to bust wide open. I flashed to the pool and the God damned hot dog and the awful judgmental sneers. “I needed you to know how much your kindness meant. Thank you.”

She pulled me into my second completely unexpected (and very enthusiastic) hug of the evening. There I stood, halfway out the door and onto the sidewalk being hugged tightly by a complete stranger. Darby looked at me through the window and cocked her head. “I’m a social worker,” the woman said by way of explanation. “I have a nephew with Asperger’s. It’s OK. She was just fine.”

I kept looking back at the girls, waiting for the inevitable melt. As I tried to disengage, the woman grabbed my hand. “Take care of YOU,” she said. “She’s going to be fine. Make sure Mama is too.” I smiled at her, thanked her again and ran back inside.

I got in just in time. The noise was building to a crescendo. Kendall cried out and I scooped everyone up and out and we ate and slurped standing outside.

My heart was full.

One person. Just one. One person with an understanding smile, devoid of judgment. Sometimes that all it takes.

a winnie sandwich

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Nearly every Friday night, the Wilson clan heads to our local Japanese-slash-Korean restaurant for dinner. It’s a relatively small place whose primary business is take-out. The dining room (even calling it a ‘dining room’ is a little grandiose) is therefore usually fairly quiet, especially at our early dinner time.

This past Friday, the girls and I decided that we wouldn’t let Daddy’s absence keep us from our Friday night routine. Closer to the truth, Mama decided that Daddy being away wasn’t gonna force her to cook, but why split hairs?

Armed with the safety net of Kendall’s iPod and earphones, we piled into the car and set off for the restaurant.

As always, our waitress, Winnie came over to greet us. As always, she brought a tattered bag of assorted crayon stubs over to the table before anything else. As always, Kendall reached into the bag and grabbed the red one. As always, Winnie asked Kendall what she would like to eat. As always, Kendall said, “Meeeeeeee I have chickenandricepleeeeeeeeease?” As always, Winnie asked what she would like to drink. As always, Kendall responded, “Meeeeeeee I have water pleeeeease?” As always, Winnie smiled and cheerfully said, “Good girl, Kendall!”

I love Winnie. And not just because she brings me spicy scallion pancakes that I don’t order (they don’t have any calories if you don’t order them. I read that somewhere.) or because she asks the sushi chef to leave the wasabi out of Darby’s tuna roll even when we forget to ask.

No, I love Winnnie because she adores my girls.

I love her because she makes a fuss over each and every picture that Darby draws for her and tells her that it is ‘even better than the last’ (or the last or the last or the last). I love her because she teaches the girls the names of the colors in her native Chinese. I love her because she faithfully and enthusiastically plays her part in our ritual every week. But most of all,  I love her because she unconditionally accepts Kendall.

Not once has she looked oddly at my baby or questioned why she speaks to her the way she does. Not once has she asked why she wears her headphones when it gets too loud or why she sometimes shrieks in response to a child’s cry. Winnie’s smile has never flinched – not for a second – no matter what we’ve thrown at her.

As we got up to leave on Friday night, Kendall ran to Winnie and wrapped her little arms around her waist in a hug. Winnie’s face lit up, thrilled to have some Kendall love – even in the middle of the restaurant.

With a smile, I walked over to take Kendall’s hand and lead her outside. I was standing about a foot in front of them when – quick as flash – Kendall made her way around Winnie and hugged her from behind. Winnie looked behind her and laughed. I reached out for Kendall’s hand. Before I knew what was happening, Kendall had reached out, grabbed BOTH of my hands and pulled me into an awkward hug with Winnie. “We made a Winnie sandwich!!” she yelled.

Before I had time to catch my breath and register the fact that I was standing in the middle of a restaurant wrapped in a wholly unexpected embrace with our waitress, the impact hit. Any space that may have kept us at least minutely separated a moment before was long gone, along with my wind.

Darby had come running up behind me, wrapped her arms around all of us and yelled out, “Mama, now you’re the cheeeeeeese!!!”

Nose to nose, Winnie and I laughed so hard we nearly cried.

As we finally walked out I laughed at the absurdity of it all. And thought, “Wow, I really should have given Winnie a MUCH bigger tip.”

21 seconds

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Matt was away this weekend. I woke up on Saturday morning with a start and the oddest thought. I bolted upright, looked at the clock – 5:22 am – and wondered breathlessly, “Did Matt do his stretches?”

As I’ve mentioned before, Matt has taken up running. Unlike say, me – he’s REALLY taken up running. He runs nearly every day and is very strictly following a training program that will have him ready to qualify for the grueling Boston Marathon.

He tweaked his knee a while back and again, unlike me – he actually went to a doctor to find out what to do about it. The doctor gave him some stretching exercises to do every night before bed and yes, you guessed it – unlike me – he’s actually doing them. (I ‘ve had a herniated disc in my neck for about six years now. Two years ago, when I started to get some serious nerve issues, I finally sought help. They gave me a sheet of various exercises and stretches to do. I lost the sheet within days and two years later, my neck still hurts like hell. Genius.)

Anyway, back to Matt. Every night before bed, he diligently runs through his short program of exercises. The routine lasts about five minutes. No matter how late it is, no matter his mood, no matter what the events of the evening might have been, he does it.

And somehow, when he wasn’t here, the first damn thing that I woke up thinking about was the fact that I hadn’t seen him carry out the ritual.

Routines are soothing. There’s comfort in knowing what to expect. Is it any wonder that our kids crave structure? That they abhor surprise transitions and quick changes?

Years ago, I had a dear friend named Jon. We would talk on the phone for hours into the night, covering every topic from the stock market to solo circumnavigation. During the course of our friendship, Jon gave me a few gifts that I still cherish. He gave me a model sailboat – a perfect symbol of the power to make a choice. He gave me wonderful books like Maiden Voyage and Nothing to Declare. And one night, he gave me the Walk of the Sentinels.

I can’t remember exactly how it had come up. Our conversations tended to meander over the river and through the woods and take us in any and every imaginable direction. All these years later, it makes no difference how we wound up there, only that we did.

“I find tremendous comfort,” he said, “in knowing that no matter what is happening in the world – no matter what is happening in MY world – no matter how crazy or chaotic things may feel – they are always there doing exactly the same thing in EXACTLY the same way. 21 paces, 21 seconds. 21 seconds, 21 paces.”

He went on to describe, in great detail, the Walk of the Sentinels at the Tomb of the Unknowns at Arlington National Cemetery.

He explained that the Sentinels are the very best of the Army’s elite 3rd Infantry. He told me that the guards have to meet specific height requirements and that their uniforms and weapons have to be as immaculate as their records. These guys, he said, are the best of the best. But it was the walk that he was focused on.

He explained that the Tomb Guard walk at a prescribed pace – precisely 90 steps per minute. They march exactly 21 steps down the mat behind the tomb, face east for 21 seconds, turn and face north for 21 seconds, then take 21 steps back down the mat and repeat the process from the beginning.

“When I feel like all hell is breaking loose, I think of those guys, Jess. I think of them at 2:30 in the morning when I wake up in a cold sweat over something from work. I think about them at 10:00 at night when I’m laying down to sleep and at 5:00 am when I wake up. They are always there – 24 hours a day, 365 days a year. They walk through the rain and the snow. They walk through the blazing sun. 21 paces, 21 seconds. 21 seconds, 21 paces. It NEVER changes.”

There is comfort in routine. There is relief in consistency. There is peace in knowing that something – somewhere in the world – is always happening exactly as we expect it to.

It’s nice to know, especially when all hell breaks loose.

at a loss

***

This post is dedicated to the memory of Tayley the frog. Sweet dreams, little guy.

***

Spacial orientation defines our natural ability to maintain our body orientation and/ or posture in relation to the surrounding environment (physical space) at rest and during motion. Genetically speaking, humans are designed to maintain spacial orientation on the ground.

The three-dimensional environment of flight is unfamiliar to the human body, creating sensory conflicts and illusions that make spacial orientation difficult, and sometimes impossible to achieve.

~ Federal Aviation Administration

Something wasn’t quite right with one of Kendall’s two frogs on Tuesday night. One was swimming around – or at least just kinda hanging around – in its typically froggy way, but the other one seemed to be spending most of its time lying listlessly under the rock in their little tank.

And so, it wasn’t a great surprise when I peeked in the tank the next night and found him floating on the surface of the water.

I held my breath for a moment, trying to gather my thoughts and decide how best to tell Kendall the news. There really wasn’t much to decide.

“Kendall, honey – I need to tell you something.”

She was in motion – moving, always, always moving, moving.

“Sweetheart, I need to tell you something,” I said again. She stopped for a moment and looked my way. “Honey, one of your frogs died.”

“It did?”

“Yes, baby. Do you want to come see him?”

“Oh yeah.”

We walked over to the tank and I pointed to the motionless frog.

Darby came up behind Kenz and asked, “Which one is that, Kendall?”

“That’s Tayley. Tayley died. He’s dead.”

“Yes, baby, he is.”

She went back to orbiting the room – moving, moving, ever moving. Matt and I asked if she’d prefer to honor him with a traditional flush or to bury him, as we had done with Darby’s fish, Spaulding just a couple of weeks before.

“We would flush him,” she said without hesitation.

I was worried. What if we flushed him and then, just a moment later she said, ‘Now we would bury him’? That’s the way things tend to work around these parts. I asked again. And again. She was sure. I wasn’t.

Matt scooped him out of the tank and brought him into the bathroom in a small cup. Kendall and I stood by as he gently poured him into the toilet.

Kendall began to laugh. Loudly. Very loudly. Somewhat manically. “He’s in the potty!” she yelled, catching her breath as she laughed hysterically.

Matt and I remained what I guess we thought was appropriately somber. He told Kendall he was going to flush the toilet and we said good-bye to Tayley as he made his way through the plumbing and into the great beyond.

Kendall ran back into her room, still laughing heartily. “Tayley went in the potty! Tayley died. He’s dead. He went in the potty! He got flushed in the potty!”

I suddenly panicked. She was laughing her little ass off. This was funny. Or something. I looked at her other frog. What if she decided to flush it, or, heaven forbid, Darby’s new fish? I got down on my knees in front of her.

“Kendall, we don’t ever flush animals that are alive, OK? Only Mama or Daddy can flush a fish or a frog OK?” I regretted our decision not to bury him.

She sensed something in my tone. She must have heard my anxiety. She balled her little fingers into fists, rounded out her arms and flexed like a tiny, not green Incredible Hulk and began to shake.

“Honey, you didn’t do anything wrong, OK? I just want you to know that ONLY Mama and Daddy can flush anyone. Who can flush anyone, Kenz?”

“Mama or Daddy.”

We went through this bizarre conversation a couple more times. It’s the only way to ensure understanding.

As soon as I stopped talking, she bolted away and spun herself around. Suddenly she found herself back where she started – we were face to face. She shook again, her little arms tensed all the way down to those tiny, angry fists. Then she took a step back from me and folded her arms in a pose that would have been a great imitation of Barbara Eden in I Dream of Jeannie had it not been so frighteningly intense.

She came toward me and butted me lightly with her forearms, still held out in front of and away from her little body. “Fight! Fight! Fight!” she yelled. I was taken aback. I had absolutely no idea how to react. “We’re fighting!” she continued as she came toward me again. “Fight! Fight! Fight!”

It couldn’t have been more obvious that she wasn’t trying to hurt me. She was stopping just shy of me or at most, touching me lightly. But her stance was painfully, frighteningly aggressive. Her entire body was ready for action. Even her jaw was set and tight. She was expressing SOMETHING.

“Fighting is MEAN.” she said loudly. “Do we fight?”

I snapped out of my daze long enough to answer her, “No, baby, we don’t fight.We love each other.”

I was lost. I had no idea where I was in the room. I’d lost my compass. I was watching this little person who I love more than life trying to tell me something, but for the life of me I didn’t know what. Worse, I didn’t recognize her. I don’t know how else to explain it. I searched her eyes, then her entire face for my baby – for the little girl who I know – who I try so hard to really, truly know. I didn’t see her. And she certainly didn’t appear to see me. She looked at me so intently, but she – my Kendall – wasn’t there.

She ran out of the room and, at Matt’s prompting, ultimately made her way into the shower with her sister. I fought to steady myself. The room was tilted like a fun house ride. I’ve always hated those rides.

Matt walked in and I tried to explain what had happened. I couldn’t. After trying to relate the story I said, “I feel like I’ve lost my spatial orientation.” He tilted his head like a sweet and terribly confused Golden Retriever and added “Huh?”

The rest of the evening unfolded just like any other. There was not so much as a trace of earlier events. Kendall was playful and happy.

At bedtime, I curled myself around her back as I always do. We cuddled and I pulled her as close to me as I could.

“Kendall,” I began tentatively, “when Tayley died, how did it make you feel?”

“He died. Tayley is dead. We flushed him.”

“Yes, honey, but when he died, how did you FEEL?”

I was on unfamiliar ground. I was desperate to give her a forum to talk about her feelings. But she doesn’t have the language to express more than two of them – or three if you count the occasional ‘frustrated’. I have no idea how much she understands what ‘feelings’ even are. But she had FELT something. I know better than to make the erroneous assumption that because we can’t see her emotions, she’s not feeling them, and this time their was no way in hell that she hadn’t felt something pretty damn intense.. So what then? What had it been?  How do I give her the tools to talk about how she feels without making assumptions about how I think she feels? Just because losing a pet would make ME sad, can I assume it should or does make her sad too? Gaaaaah!

“Because he died,” she said.

“Yes, honey, HOW did you feel because he died?”

I gently asked three more times. I was determined not to lead her into an answer. If I put words into her mouth they’d be meaningless. The third time she answered differently.

“I feeled sad.”

Progress. HUGE progress.

“You know, Kendall,” I said to her back, “when I feel sad I like to have a hug. What do you like to do when you feel sad?”

“I like to say about rainbows and then I am happy.” She began to sing. “Happy Happy Happy! Happy Happy Happy” to the tune of “Conga! Conga! Conga!”

So um yeah. There we were, in the dark, after losing her first pet, singing a happy Conga. She stopped singing. “Tayley is dead. Like Spaulding. But we CAN’T talk about it.”

The wheels started spinning in my head – why would she think we can’t talk about it? The pieces came together pretty quickly.

When Spaulding died, Kendall talked about it incessantly. Each and every time that she walked by his empty tank she would say, for all the world to hear, “Spaulding’s not here anymore. Spaulding is gone. He died.”

As you might imagine, this practice was hell on her sister. Once Darby’s new fish, Splooshy took up residence in Spaulding’s old tank, Kendall would say, “There’s Splooshy. No more Spaulding. Spaulding’s all gone.” Darby did not need to be CONSTANTLY reminded that Spaulding was gone. We explained to Kendall that we couldn’t talk about him all the time because it made her sister sad. It was perfectly logical that she would think this situation was exactly the same.

I scrambled to explain that we could talk about Tayley all she wanted, anytime.

I finally kissed her good night, counted down and headed out of her room. I went down to the office for a while. I was waiting. Waiting for the storm – the meltdown – the bottled hurricaine of emotion that I thought was sure to come. I remembered this night and tried to ready myself for what I thought was ahead.

I finally went to bed. Kendall slept through the night without so much as a peep.

I tossed and turned but finally fell into a restless, anxious sleep. How do we do this? How do we guide kids who don’t have the facility to verbally express emotion toward an outlet to process those emotions? How do we teach them to use words when we don’t know which words are appropriate? How do we assign meanings to feelings without knowing which feelings they are experiencing? How do we know which reactions are pretty well universal to life events like these and which are simply ours and don’t apply to a mind that works differently?

When Darby lost her fish she cried. A lot. She poured out her soul with each tear. She told me that she was sad. She told me that her heart hurt. I knew what to do. I knew how to soothe her pain. I knew there was pain.

With Kendall, I tried. I really, really tried. And still, I can’t answer a single one of those questions.

russ, meet everyone. everyone, meet russ.

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One of my favorite aspects of blogging is the dialogue that ensues long after a post is written. Some of it happens right here, in the comments. Some of it spins off between readers and leaves me far behind. And some of it – much of it, in fact – happens via delightful e-mail exchanges, rich with thought provoking (and often post-provoking) conversation.

One such conversation started on Tuesday afternoon. I got an e-mail from my friend, Russ. Hmm, wait – is ‘friend’ appropriate, I wonder? ‘This guy’ Russ certainly doesn’t work. It sounds pretty dismissive. ‘Some dude who I’ve had a few really nice e-mail dialogues with’ is really clunky. I mean, try to say it three times fast. Or even one time fast. Oy.

Where was I? Oh, Russ.

Screw it.

Everyone, meet Russ. Russ, meet everyone.

I’m going to just let him take it from here, mmmkay? Take it away Russ ..

I am a long-time lurker here and a sometimes poster to the comments. I have also on occasion written and Twittered about my own family’s experience with the autism spectrum, but I do not have my own blog.

I have two beautiful children, Trevor, 8, and Lindsay, 7, and an incredible wife, Susan. Our son was diagnosed with PDD/NOS just after his second birthday, and little in our New Jersey home has been the same since.

I’ve never met or even spoken to Jess or any of the regular posters here, but I feel like I know so many of you.

I discovered Jess’s blog when she had an “In Their Own Words” piece published on the Autism Speaks site. I was amazed by her writing, and by the community that has developed here. I was also taken by how closely so many of the stories resonated. No matter how unique our individual children, there is a common thread to the autism narrative, as we all feel our way through this puzzling disorder and do our best to advocate for, educate, and protect our kids.

Jess’s post the other day about forgetting money for Kendall’s hot dog at the pool hit a little too close to home. I decided to share with her my own “best laid plans” moment from the weekend just past. That e-mail became an exchange and an invitation to guest-post the story here. I consider it an honor, and hope I haven’t lowered by too far the incredible writing standards here .

Consider this a “diary of a dad”…

Did you ever do something completely outrageous, if only just to satisfy your special needs child? It’s like a moment when you surrender to autism, and you can’t decide if that is good thing, a bad thing, or just a fact-of-life-on the spectrum autism thing.

That was me this past weekend.

I was trying to put a positive finish on an up-and-down weekend. I had cringed as Trevor struggled to follow instructions at the hockey clinic he attends. I beamed when he came off ice smiling, proudly telling me how sweaty he was from the hard work. I took it like a kick in the gut when I asked Trevor what his friend from special needs camp might like to do on a play date and the answer began with “well I like garages and he likes traffic lights…”

Trevor does like garages. He classifies all houses by their garage doors, and he describes the doors by naming their color/window scheme, starting from the bottom up. There’s “brown-brown-brown-brown” and “white-white-white-glass” and “white-white-glass-white” (because the windows aren’t always in the top row. Who knew?)

There’s even “ficky glass” — his word for windows that aren’t square but rather are some fancy shape. Oh, and “T glass,” or windows with four panes instead of one.

Apparently our garage door — “white-white-white-white” — is the lowest of the garage low-rent district.

A week ago, when we were talking about garage doors (in an attempt to distract Trevor from his anxiety over the brutal traffic coming back from the Jersey shore), I happened to mention that ours was actually “white-white-GLASS-white,” which has much more status in the garage world. The windows had been painted over by some previous owner.

Ever since that moment he’d been asking me if we could scrape the paint and transform our garage. It was not a project I was enthusiastic about, for a number of reasons. Nevertheless, on Sunday I finally ran out of excuses.

The clincher came when Trevor agreed to go with me to the store to get the supplies. He NEVER agrees to go to the store, even if it’s to get him something.

I relented. I was ON BOARD. So what if it was 90 degrees and 1000% humidity and I would be scraping paint inside the unventilated garage with the door closed? (Did I mention the windows were painted on BOTH SIDES?) Damn it if I wasn’t going to win Dad of the Year, or die (likely from paint-chip inhalation) trying.

A few minutes into the job I realized how futile it was. The paint was stubbornly clinging to the windows. I had to keep shooing Trevor away from helping for fear he’d inhale some of what I was trying to block with my 99 cent painter’s mask.

Finally, I got a single pane cleared — on the outside. Dripping in sweat and covered in paint flakes, I decided that I would do the inside of that one window and stop. Then I’d let Trevor come up with a new name for the resulting garage scheme.

I moved inside the garage to do the other side. I shut the garage door and started scraping away. I got it about half done when I pushed a little too hard and the glass shattered. My heart sunk. My anger spiked.

I was angry to be soaked in sweat, inhaling God knows what, scraping stupid paint off a stupid garage door window because if my son was “normal” I wouldn’t be there. I was angrier still that I wouldn’t be able to deliver for him. I threw down my scraper and threw open the garage door — conveniently forgetting that in doing so I was raising the glass shards directly over my head. The glass came crashing down on me. I felt my scalp. My hand was covered in sweat, and more than a little blood. Luckily it was just a nick.

I went inside. For about the tenth time since I had started, Trevor asked if I was all done, and his look just broke my heart. It was as if an affirmative answer would have made everything all right, if only for a moment. I think as special needs parents, we always are trying to deliver those moments. Every once in a while we can reorder the world to suit our kids.*

I told Trevor the bad news. I feared a meltdown. He took it well, but was disappointed. I went back outside to tape some cardboard over the shattered window, and then finally allowed him to see my work.

He looked it over and pronounced the result OK. We now have a “white-white-SHADY GLASS-white” garage. In the words of the Jeffersons, we’re “movin’ on up.”

I told this story to several co-workers Monday. They got it but they don’t GET it. And that’s OK too. Maybe the next time they see a child with an “odd” interest or one melting down in public, they’ll think twice about their reaction. Maybe they’ll start noticing exactly how many different types of garage doors there are, too.

The silver linings are out there, they’re just sometimes, really, really, REALLY hard to see.

* ed note .. The italics are mine, because I loved the simple, torturous beauty of the line, ‘Every once in a while we can reorder the world to suit our kids’. It made my heart hurt. I GET it. Down to my toes, I get it. If you do too, please don’t be shy. Leave a comment and let Russ know.

Because, ultimately isn’t this what the dialogue is about – finding and sharing with those who GET it?

Thanks so much for telling your story, Russ.

p.s. I think this makes us friends now. I’m just sayin’.

lollipop lollipop

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I’ve been working on a BIG post. Or at the very least a HEAVY one. One of those posts that starts with “… and it felt like the wind had been knocked out of me when …” and ends up somewhere around “so how do we ever know we’re really doing right by our kids?”

I keep coming back to it, but attempting to corral my thoughts into a coherent post has been like trying to herd wet cats. I’ve tried to wrap my arms around it three times now, but each time the cursor taunts me and a renewed sense of futility sets in.

Since I’m not particularly fond of cats in the first place, and howling, screeching, clawing, generally pissy kinda ones scare the crap out of me, I’ve decided to leave off for a while. Hopefully they will mellow with time, lay around lazily in the sun for a bit and finally let me tease them onto the page with a piece of string when they’ve got their guard down.

If not, I’ve at least answered one of life’s nagging questions, “Yes, Virginia, you CAN take a metaphor way too far.”

In the meantime, I offer a little slice of life – sticky and sweet and inimitably Kendall.

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“Ooh, Kenz, that looks like a good lollipop!”

“Mmm hmm.”

“Is it yummy, baby?”

“Mmm hmm. It’s so …”

She stops – holds the lollipop up to her face with a sticky hand and thoughtfully inspects it for a moment before continuing.

” licky.”

this

photo by daddy

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Darby called from my mom’s house on Sunday morning. She was having a ball – all the nerves of the night before long since eclipsed by the anticipation of the day ahead.

I was so proud of my girl. She was proud of herself. She had conquered her fear and made it through her first sleep over. It was in her voice. She sounded older, more poised, more mature.

She wanted to speak to each of us – to touch each base in turn.

After listening to a delightful run-down of the schedule for the day, I switched the phone to speaker and handed it off to Kendall.

“Hi, Kendall!”

“Hi, Darby.”

“How are you, Kenz?”

“I’mfinethankyouhowareyou?”

“I’m fine, Kenz – Great job asking me! Kendall, what are you doing?”

Kendal tapped her hands on her thighs.

“I’m doing this.”

“Oh. That’s nice. What’s ‘this’, Kenz?”

“This.” She tapped her hands on her thighs again – a little more slowly, as if to show the detail in the action.

“Kendall, can you use your words to tell me what you’re doing? Can you DESCRIBE it?”

“Sure, Darby. I’m doing this.” She drew out the word this time .. thiiiiis.

“Well, that sounds great, Kenz. Have fun doing – um, ‘that’.”

“Ok, Darby.”

Quiet. Kendall was getting fidgy. The conversation has lasted far longer than most.

“Kendall, are you all done talking?”

“Oh yeah.”

“O.K. I love you, Kendall.”

“I love you, Darby.”

I took the phone back before sending it over to Daddy.

I told her that I loved her more than salty french fries on the beach.  What? Not the ultimate yard stick of love in your house? Whatever.

I did NOT tell her that I had wandered into her empty room the night before. I did NOT tell her how I’d straightened her quilt (again) or moved her stuffies into their preferred places. I did NOT tell her how I’d curled onto her pillow for just a second (or um, two) and cuddled her favorite stuffed bunny – the one who sleeps at her back every night – cherishing the smell of her on its ‘fur’. I did NOT tell her that I felt like my left arm was missing and that I couldn’t wait for her to come home.

Instead, I told her how proud I was of her. I told her that I couldn’t wait to see her the following day. I told her she was going to have a great time with her grandparents, which is exactly what she did.

Yes, my little girl is growing up. And I’m so proud I could bust.