Summer nights and rules for living

It was in many ways a perfect summer night.

We were enjoying the breeze of my mother’s porch, my sister Carol draped prettily over an oversized chair. We spoke of many things, with laughter punctuating the conversation.

I remember her laughter well. If I listen closely I can still hear it. I remember her smart and sassy responses. The slight smug smile. Grace. Dignity. Her brave soul. That accepting nature. The funny little snort sound when she really laughed. (Sorry Carol, it had to be said). All that coupled with her killer sense of style.  

Given the overall lighthearted nature of the conversation, no one would have guessed Carol was battling terminal cancer. That was the beauty of Carol. I was trying to wrap my arms around autism. I knew my struggle paled in comparison.

It was on this night we jointly developed our rules for living, most I still live by today. In honor of Carol’s birthday, I’d like to share them: 

• Find the humor in life. Remember to laugh.
• If someone asks if your fake diamond earrings are "real" the
correct answer is yes. If you can touch them they are real.
• You are not required to answer stupid questions, but stupid questions are not an excuse to be rude.
• Be considerate – you aren’t the only one fighting a battle.
• Wear pink sometimes. Pink is a very good color.
• If you have cancer, it is OK use it to your advantage once in a while.
• Don’t eat snakes. Just don't.
• Do whatever you need to do to get from here to tomorrow, as long as it is (mostly) legal.
• If today isn’t a good day, tomorrow will be. A good day will eventually come.
• Don’t expect happiness to find you. Go look for it.
• For chemo, wear a sparkly cardigan. It is both stylish and provides good access for your port. In fact always wear something a little sparkly.
• Diamonds are nice but anything that sparkles will do.
• There is no such thing as denial. Denial is just hope in disguise.

And lastly and possibly my favorite:
• Always accessorize. Always.

On this cold December day will wear my sparkly scarf and remember Carol. I will remember the laughter and the tears. But mostly the laughter. Happy birthday little sister. 

Thanksgiving and thank you

I remember my first Early Intervention meeting. A small room full of parents, all from different backgrounds with one commonality: our kids. I remember looking around warily at the mish mash of faces. Who were you?

I didn’t wonder too much, though. I wasn’t planning to stay long. Nothing personal. Special needs just wasn't on my agenda. But as so often happens, fate had other plans. So we stayed a little longer.

As Sam began his preschool program for kids with educational challenges it became clear his issues wouldn’t be resolved quickly. We lingered longer in this place. We started to know you and your families. I met your beautiful children and marveled at their sweet brave hearts. I began to understand we couldn't do this alone. 

Some of us only crossed paths briefly, some became permanent fixtures. Still I remember you all. 

You provided the knowing smile across the playground, the reassuring words, the voice at the end of my phone, the irreverent laughter I grew to love. You magically appeared on the darkest days offering a kind word, a hug or a nod of understanding.

You didn't compete for best mom or best kid. You cheered Sam's accomplishments as enthusiastically as your own. You sympathized when challenging days stretched from weeks and months. You openly admitted mistakes and offered suggestions based on those experiences. You shared your life openly and in doing so helped me find my balance.

To every special parent out there: those I've already met and those I've yet to meet, thank you, thank you. Thank you for your patience; for indulging my fantasies in the early days. Thank you for the nod of understanding, the wry comment to help me laugh. Thanks for the coffee, the care packages, the Charlie Brown Christmas tree, the shoe racks, the friendship, the hugs, the kindness, and for never judging us too harshly. Thanks for every act of kindness no matter how grand or small. Thank you for the acceptance and waiting patiently while I figured out I was a here to stay. 

Most of all, thank you for never saying, “I told you so” when you could clearly see what I could not.

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Breaking the news

I should have mentioned it sooner. That thought crosses my mind as I am asked a simple question: “Do you have kids?” I usually try to work it in long before the question is asked. But for some reason it didn’t work out that way today.           

“Yes. Just one. A boy, 17.” I respond, wary of the topic. “Oh? What grade is he in?” she asks. Scrambling to think, I say. “Tenth, No eleventh. Yes eleventh.” Her quizzical look seems to say, “You don’t know what grade your only child is in?”

No, I don’t. We don’t move from classroom to classroom or get a new teacher each year. The school year isn’t punctuated by summer vacation. A day rolls into a week and then a year with little change.

I try to segue to a new topic as she interjects the question of where Sam goes to school. “We don’t go to school locally,” I say finally. “Sam is has autism and attends a wonderful school about an hour away.”

I catch the look of discomfort as it flits across her face. I watch her hand briefly cover her mouth as if to prevent the words, “I am so sorry” from spilling out. And there it is. The subtle reminder my child is undesirable to some.

I want to tell her a part of me understands. When I first heard the word autism, I was scared. But that was so early on I barely remember the emotion. I don’t know if she would understand.

She hasn’t experienced the laughter. She hasn’t seen the victories. She doesn't know the joy or laughter. She doesn’t know the people we have met. She hasn’t had her heart melt as Sam looks deeply into her eyes with an ever-sly grin. She doesn’t know the quiet peace of holding hands. She doesn’t know our life.

And so I smile and gently respond, “Thank you. But I am not sorry.” What I hope she does understand is that like her, I see perfection in my child. Like her, I can't imagine him any other way. 

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Basketball Sam

There's a new passion at my house.

Late in the afternoon Sam heads to the driveway to shoot hoops.  He pauses for a moment, carefully considering the first shot. He goes into his layup position. And shoots the ball directly up through the hoop and then watches the ball gleefully as it makes its decent back down through the net. Since it went through the hoop twice, does it count for double points? No matter. Mission accomplished. Sam dissolves into incontrollable laughter. 

“Sam,” I admonish. “Do it the right way. Come on, sink it.” He smirks and casually throws the ball up, hitting the backboard. As he catches it on the rebound he announces, “Awww. You missed it.” Shooting again, he sinks the ball with ease. He lays up for a second shot and sinks that as well. 

“Come on,” I call out. “Three it a row. You can do it.”

And he can do it. I’ve seen him. But apparently not today. He is having far more fun playing the game by his rules and getting a reaction out of me.  

“Sam,” I say. “How are you ever going to play for the NBA if you shoot that way?”  He laughs, “Awww. Mommy is sad. Waaah, waaah, waaah.”  Hopeless, I think.

Sam is occupied so I leave for a moment to grab a sweater. I discretely check from my upstairs window. To my surprise he begins to play the game as it should be played, narrating his shots all the while:

“Jump shot!” he announces. Though his feet never leave the ground, he sinks it. From another angle he sinks it again, saying “Again!” When the next one skirts the rim without making it through he encourages himself with, “Nice try!” With the next shot, as it hits the backboard and ricochets back, he emits a low, “Not quite.” He repositions and sinks another and punctuates with a simple, “Yes!” He catches most of the rebounds and sinks the majority of his shots.

The words I hear are not his, of course. Somewhere he is playing with Tom, Brendan or Dante, echoing the words he has heard them say.

On my return Sam immediately heads under the net to toss the ball up and through. The Sam I saw through my window has disappeared. As he slyly glances at me his expression seems to say basketball rules were meant to be broken and mothers exist to be annoyed.

I read while he plays for another 15 minutes or so. The game ends when the ball hits backboard and he misses as it quickly bounces, picks up momentum and lands over the wall and deep into the woods. “Game over!” He announces with a smile. And into the house we go.

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