Sunday, November 18, 2012


One recent, rainy morning, our before-school routine was not going well.  Everyone was moving slowly despite my best efforts.  Sure enough, the school bus came and went.  So I herded my boys into the car and set off through the rain-soaked streets of suburbia.
     As we approached the elementary school, I groaned at the sight of the extensive line of cars waiting to deposit children on the school's doorstep.  I maneuvered the car into the line and dropped my head back against the headrest with a sigh.  My 6-year-old pulled out a large plastic card and started reading it aloud.  Apparently, it contained pictures and descriptions of notable African-Americans in U.S. history.  As we inched toward the school drop-off zone, he peppered me with questions.

"Mom, what's a playwright?"

"What's this? E-n-t-r-e-p-r-e-n-e-u-r."

"How do you say this name? M-u-h-a-m-m-e-d.  He is a boxer."

Not all of them were easily answered, though.  As we inched forward through the rain:

"Harriet Tubman drove a train?  That's why she's famous???" Well...

"Mom, what's a Black Nationalist?"  Oh, boy.

Then came the kicker.  It was early, it was raining, and I still wasn't fully awake.  Until now.

"Mom?  Why did they put Rosa Parks in jail for doing something right?"

We had turned the corner and were nearly at the drop-off zone.  I figured I had about 90 seconds, tops, to explain nonviolent resistance to my 6-year-old.  I don't remember exactly what I said, but whatever it was seemed to sit well with my little historian.  As he scrambled out of the car, I realized that in my haste, I had single-handedly given Rosa Parks full credit for the entire civil rights movement.  Ah, well.  There will be time to remedy that later.  But my little guy had the last word.  With one hand on the open car door, he paused and turned to look at me in earnest.

"Well, I would like to thank her."

And he stomped off through the rain, past an African-American teacher who gave him a big smile and a wave.

Tuesday, November 22, 2011

Fortune Teller

Recently I helped to set up my son's school for the Fall Festival (or, as my little Aspie puts it, "feshtible.") As I chatted up the volunteer coordinator, she mentioned the father of one of the students. He is a geneticist, working at the nearby biomedical research center. She described him as, "So smart, but lacking in social skills." That piqued my interest -- he sounded a lot like my family members. Apparently he was helping to prepare one of the game booths, so I set off to track him down.

Sure enough, I found him wobbling on top of a ladder with a thick swag of purple velvet slung over his shoulder. He was trying to hang the velvet from the ceiling tiles with a slim piece of twine. His wife was going to play a fortune teller. I offered to help when I saw that she was sitting wearily in a chair.

I introduced myself and tried to help him anchor the twine with bent paper clips. I could tell he felt no need for the usual social graces, so we simply worked together without conversation. His wife, however, was perfectly willing to chat. Her gray hair was pulled back in a ponytail and the strands that escaped formed a frizzled halo around her face. The halo waved gently in the breeze created by the busy passers-by.

The volunteer coordinator had mentioned this couple's son, whom the mother suspected of having Asperger's syndrome. So I turned the conversation to the topic of my child. We immediately bonded over the many challenges we had in common. As I listed behaviors and mannerisms, the geneticist's wife would nod in an exaggerated manner. She would widen her eyes and point repeatedly at her husband, who had his back turned to us. It was amusing and comforting at the same time.

The irony that a hard-core scientist was helping to set up a fortune-teller booth was not lost on me.

He came back down the ladder. As I worked with him, I noticed many tell-tale signs. Our interactions were brief. He couldn't maintain eye contact for very long. He would laugh at inopportune times. And I could tell that I was a little boring to him. With the briefest of adieus, he left to track down more paper clips.

I saw a pile of golden tassels waiting to be hung, so I offered to do so. The fortune teller thanked me and informed me that she was suffering from fibromyalgia. As I hung the tassels, this woman proceeded to tell me about her efforts to find her birth mother (apparently she died an alcoholic, and young,) her dismay at finding herself expecting at age 46 (with the son we were now discussing,) and her husband's reluctance to have their son evaluated for an autism spectrum disorder. We bonded. She and I were very different, yet had so much in common.

After the booth was set up, I left to help others, promising to bring my son to her booth later. My husband brought our children to meet me at the fair and we proceeded to enjoy the games and activities.

Later, I took my son by the hand and led him to the fortune-teller's booth. The golden tassels were falling off and the poor geneticist's wife looked nearly as droopy as the purple velvet swag. But she brightened as we approached. I introduced my son and he sat in the chair next to her.

She took his little pink hand in her wrinkled one and opened his palm. Then she traced one of the lines on his palm and declared, "This is called your lifeline. It is very long, which means you will live a long time!" Then she traced another, and winked at me. "This means you are very... energetic." She traced a third line and said, "This is your love line. See how deep it is?"

She paused, and locked eyes with me for a moment. The she looked back at him. "This line means that you have a lot of people who love and care for you. You are a lucky boy!" My eyes misted over for a moment and then she was done. She handed him one of those heat-sensitive red translucent fishes as a parting gift. As we walked away, I smiled back at her in gratitude. I didn't need to say anything, for that was enough.

Tuesday, September 13, 2011


Each morning, I wake my special-needs son a little earlier than the others. Each morning, we trek to the bus stop and he boards the bus that takes him to a separate school from that of his neighborhood peers. It's been a long journey, but we've made so much progress.

A couple of years ago, as I loaded my son onto his special-needs bus, I noticed a new face peering at me. The bus driver told me that this was Connor, an itty bitty three year old. I leaned onto the head rest in front of him and smiled.

"Hello, Connor." I said.

He wriggled and thrust his backpack at me, but all he could verbalize was a mumble that approximated, "Bah-pah." He seemed thrilled to be riding on the bus.

I hopped down the bus stairs and turned to peer through the windows, hoping to see my son's waving hand. Instead I saw a wriggly Connor. As I shifted my gaze in order to spot my son, I noticed a film of dust that coated the windows. And on Connor's window, drawn in the dust, I saw a heart.

My breath caught in my throat. Likely just minutes before, his mother stood right where I was standing. She probably was a wreck with all those warring emotions -- guilt, fear, sadness, worry, exhaustion, love, and hope. All those washed over me as the wind from the departing bus whipped up my hair and I waved goodbye.

I should have left her a note in the dust, myself. Wisdom that I could impart from my experience as a special-needs mom. Something that would make her feel better, and let her know that things would be all right: That Connor will get off the bus again and be back in her arms. And each day will be a little brighter and a little better. But the window was small and surely would not hold everything I'd like to say about the long road ahead. Maybe, for now, I would simply write,

"Hold on tight."

Friday, April 15, 2011

Glad to be wrong

Part II of this story is here.

The first game of Spencer's season was a scrimmage-- a practice to help acclimate the kids to basketball. Before each quarter, the coaches lined up the players and paired them with a member of the opposite team for defensive purposes.

At this scrimmage, I knelt next to Spencer and whispered a few reminders about staying with his man. Then I turned to look at who he was paired with-- and saw the embodiment of fear.

The poor child was distraught. His eyes were red and swollen. His lips trembled, and he clasped and unclasped his hands repeatedly. His breathing was irregular, and his legs shook. My first instinct was to reach out and hug him. Instead, I asked,

"Hi, sweetie. What's your name?"

"M-m-m-Michael." he gasped.

"Well Michael, this is Spencer. You two will be guarding each other. Spencer, can you say hi?"


"Hi." he sniffled.

It became obvious rather quickly that little Michael was way out of his comfort zone. He flinched away from the ball and avoided the crowd of players. He was mostly a non-participant, much like... much like Spencer! In fact, they were a perfect match.

Each time the ball changed possession, Michael and Spencer would run to the opposite end of the court, face each other, and fold their hands neatly in front of them. The rest of the game would swirl on around them.

Over the course of the regular season, we played Michael's team two more times. Every time they were on the court, Spencer and Michael were paired up by what was an unspoken agreement between the coaches.

When Spencer's defense would lapse (which was-- ahem-- quite frequently,) Michael was able to catch passes from his teammates and try to score. The spectators would go wild. I had a sense that he didn't get this chance very often.

Sometimes I wondered what Michael's parents thought about the situation. Did they find it insulting that their "normal" child was always paired with a child who had a disability? I knew it wasn't my problem, but I did think about it from time to time.

We ended up playing Michael's team for the fourth time, in the second round of the playoffs. I saw a different child then. Michael was confident and tried hard. He and Spencer were, yet again, a perfect match on the court.

We lost that game, and were out of the tournament. But as we lined up to give the other team high-fives, I saw a man standing at the side of the court. He was waiting for me.

It was Michael's dad.

He wanted to let me know that Michael used to hate basketball. But when he played our team, Spencer changed his mind. In fact, before every game, Michael would ask if he would be playing Spencer's team that day. That fact was the only thing that mattered to him. Then Michael's dad said,

"Spencer is the reason why Michael now enjoys basketball. Thank you so much."

I was speechless. Here, I had thought that Spencer's performance in the game was the highlight of the season. But I was, happily, so very wrong.

Thursday, April 7, 2011


Part I of this story is here.

A few games into the basketball season, I realized just how confusing the sport must be to my special-needs child. His teachers and therapists (and parents!) had spent years teaching him proper social behaviors. Don't hit. Don't steal. Don't bump into people on purpose. Don't knock them down.

And here we were, nullifying all that.

You should have seen his face when I told him that all those "improper" behaviors were generally okay on the court. And when I emphasized that he was allowed to steal the ball,

"I can?" his voice went from incredulous to elated at light speed.

However, that still didn't translate to much when he was in the game. One time, his teammate was dribbling the ball down the court as Spencer stood next to the basket, wide open for a perfect pass. The moment that Spencer realized this opportunity, he whirled and fled off the court. There didn't seem to be much motivation for him to participate.

So I tried a different tactic. I bribed him.

"Stay next to your man during the game, and we'll go get a milkshake afterward." He seemed mildly interested in this idea, and he tried harder to guard his man. But it wasn't quite as motivating as I thought it would be. So at the next game, I tried something different. Our team was in the second round of the playoffs, and I hoped to at least keep him from being a liability on the court.

"What reward would you like to get if you play hard?" I asked him. He mulled it over.

"Umm... I want to eat some of my Valentine candy." I accepted his request and reviewed our goals: Stay with your man. Put your hands up if he tries to shoot. It's okay to steal the ball.

The game started, and nothing really happened with Spencer. But I began to realize just how far he had come this season: he no longer ditched his teammates and hid in my lap. He only rarely twirled pirouettes in the corner. And he was always in the midst of the action, even if it was just as an observer.

I marveled at the change. And during a time out, I reminded him of his Valentine candy waiting for him at home. He gave a little giggle and ran back out on the court. And then, something amazing happened. Maybe it was his choice of motivation, maybe it was something else. But something clicked.

Suddenly, he was on his man like glue. He sprinted up and down the court. He put his long arms up on defense and intimidated everyone around him. He jumped for rebounds and even stole the ball-- twice. I was floored. And so was everyone else in that gym.

Spencer's change was so astounding that I couldn't help but laugh hysterically. Where did this kid come from? It seemed that the hours of practice and nudging him back on the court again and again were finally paying off. And he knew he was doing well! He even pointed out his great moves to the referees. They were kind enough to congratulate him.

Granted, he was no Michael Jordan. He still couldn't dribble. But the referees let that go. And in one grand play, Spencer surprised us all. He grabbed the ball at the far end of the court and sprinted with it to mid-court (the ball didn't touch the ground once.) Then he heaved the ball over his head and chucked it at the basket from the half court line. Everyone cheered-- and laughed.

We lost that game, and we were out of the tournament. But did it really matter? I think everyone in that gym would have given the same answer.

Part III of this story is here.

Saturday, April 2, 2011

Where everybody knows your name

Last year, I signed up our Spencer for a special-needs baseball team. He was thrilled to participate in an organized sport and had a wonderful experience.

This year, I took a chance and signed him up for a "typical" (a.k.a. regular kid) basketball team. I knew it was a risk, but I was willing to take it. I volunteered to be the assistant coach, since I know some stuff about basketball.

Before each game, I would pull the referees aside and explain that my son has Asperger's Syndrome and ADHD. Though the rules of the league dictated that he always play man defense, I wanted the refs to know that he might struggle with the concept. Thankfully, the refs were very accepting and would even instruct my son during the game with what he should be doing.

"Should be" doing was tough. The gap between a child knowing what they should do and what they can actually do is wide for a child on the spectrum. Each time I sent Spencer in to play the game, I wondered what would come of it. I could never tell.

Sometimes he would just stand in the middle of the fray, no facial expression, no movement.

Sometimes Spencer would leave his team and come plop down in my lap as I sat on the bench. He would curl up in the fetal position and start humming. I had to peel him off my lap and nudge him back out onto the court.

Sometimes Spencer would run in enormous circles that would encompass the entire court. The poor child who was assigned to guard him would get so confused. I could see it on the child's face, "Am I really supposed to follow him all the way over there?"

Other times Spencer would simply watch the person he was supposed to be guarding as they dribbled past him or made a basket.

I spent most of my energy calling his name. "Spencer, go find your man! Spencer, get the ball! Spencer, come back in the gym and play with your team!" It was exhausting.

Maybe I'll enroll him in track and field next year, I thought. We'll just finish out this season. No one will miss him next year.

But I yelled his name often and loud enough that everyone in the gym learned who he was. Some parents would even try to help me by calling out to him, too. It was both exasperating and entertaining.

Not everyone was positive. One game, I had to chase my son back onto the court multiple times. I saw the opposing coach roll his eyes, turn to his assistant, and wonder out loud why a kid like that was playing in this league. I had to bite my tongue. Hard.

However, most of our experience was great. As the season progressed, we played every team. Everyone heard me calling my son's name at one point or another.

During one game, my son had a chance to dribble down the court, all alone. As he struggled with the mechanics of it, every muscle in my body was tensed. I couldn't call out to him because I was so nervous for his sake. Then I heard a voice yell,

"You can do it, Spencer! Keep going!"

It was the opposing coach, who was clapping as Spencer struggled past his bench. That tiny act of kindness meant so much to me.

Go to Part II

Thursday, March 10, 2011

Grab on

Dear "L",

Inexplicably, you turn four today. You are, and always will be, the baby of the family. I still remember the moment when I figured that out. I had been on the phone with my nurse-midwife, discussing a pregnancy-related problem. When I hung up, I knew that you would be my final child. It was bittersweet.

Three weeks before your due date, during a major snowstorm, I slipped and fell hard in the snow. Contractions started that evening, and we had to dodge black ice on the way to the hospital. The car clung to the pavement as my husband veered between the desire to move faster and the desire to be safe.

You were born a few hours later, and I wrapped my arms around your tiny body. I held on to every small experience, knowing that each would be the last of its kind for me. I tried so hard not to be sad, but to celebrate. Sometimes I was successful, others I was not.

For the first week of your life I slept with your little hospital cap under my pillow. I gripped it tightly in my hand and wept as I fell asleep (if only for a couple of hours!) No one knew of my sadness or the nature of it, for I was also joyful that my pregnancy was over.

You grew and I learned to accept the fact that the infant stages were falling behind me permanently. I found peace when I reminded myself that the pregnancy, labor, sleepless nights, billions of diapers, incredible loads of laundry, and all else would be over too. I was learning to let go.

Then you grew a lovely head of bright blond hair. It was a treasure to me; a signal that you were different from your brothers. I chose to trim your hair in a bowl-cut style; whimsical, like the overalls that I loved to dress you in.

That hair was a constant reminder that you were growing, because it started to darken. I was in denial that the color would ever change (though I knew you were, indeed, the son of dark-haired parents.) I would trim the tiniest bit possible from the front, just enough so you could see again. The day that I took you in for a real haircut and I allowed the barber to chop off the last bit of blond was so very hard.

You are wonderful at affection. You give the best hugs, holding on far past your peers. You kiss me all over my face and declare, "I wuff you so much, mommy!" You are such a part of my life.

And here you are, four years old. You started preschool last week. And although you were so ready to be a big boy and go to school, you had to double-check with me, one last time. As I prepared to leave you in your classroom, you turned and asked,

"And you'll be right back, mommy?"