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.

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."

"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.

Winners

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.

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

Belief

Many individuals with autism do not demonstrate autistic tendencies until after their second birthday. This is called "regressive autism." From a parent's point of view, it is heartbreaking. You feel that you have lost the child that you once knew, and you don't know if you'll ever get them back. Life normalizes after a while-- a different kind of normal. But you always wonder what "could have been."

____________________

We have a storm drain near our townhome. It makes the parents of the neighborhood nervous because it's wide enough for children to fit through. Many a neighborhood ball has been lost down this drain.

Thankfully, the storm drain empties out about 25 yards south, into a pseudo-creek. The water then travels to an actual creek. I haven't seen the path that the drain takes as it goes underground. But I do know that sometimes, months later, a missing ball will re-appear on the other side, a bit worse for the wear.

A while ago, our four-year-old was outside, playing with a snazzy little airplane toy. This plane makes a roaring noise that mimics the Doppler effect. It also has a light on top. He ran to and fro on the sidewalk with the plane until.... silence. He appeared at my elbow with a tragic look.

"Mommy, duh plane is gone. It falled." He pointed to the drain.

Our six-year-old Aspie was crushed. He loved that plane. His tears were especially devastating to me because he has difficulty forming attachments. I held him close and let him cry it out. Then I explained how the drain worked, and how the plane might not be gone forever.

"It will come out?" he sniffled.

"Maybe, if there's a big storm that comes all of a sudden. The rain might wash it out in a big burst," I speculated.

But I was uncertain. The dark route of the underground drain combined with the irregular shape of the plane gave me doubts. And the batteries? Corrosion was a certainty.

He recovered from his loss and, in perfect childlike fashion, went back to what he was doing. And I, in perfect mommy-brained fashion, promptly forgot the episode.

Fast-forward to months later. It was a cloudy fall day and the kids were out, ekeing the last bits of outside play from Mother Nature. It began to rain. We took shelter as it grew more intense and watched the pelting rain through the glass storm door for a while. Then I turned to load the dishwasher.

The storm subsided just as quickly as it began. And I hardly registered the click of the door closing behind our 6-year-old.

I was bent over, loading the dishwasher, when I heard the storm door click again. I turned to see our little guy: hair plastered to his face, droplets of rain on his eyelashes. He was standing in a rapidly-spreading puddle of rainwater. And in his hands was the toy airplane.

He had remembered what I had told him, and believed.

He offered the plane to me, and I took it. The plastic was discolored and there were deep gouges that marked its journey through the dark tunnel. I ran my fingers over it.

"And look, mommy!" he exclaimed. He pushed the button on top and the little light turned on. The roaring sound still worked, too. I cried. Over a toy, and so much more.

Because when he gets older, I can't wait to recount this story. I can't wait to tell him how he believed me. Then I'll tell him how I believe that we're going to make it through the sometimes dark tunnel of the autism spectrum. And how there will be storms that could leave scars. And that we'll never be the same.

But we'll make it.

Joke

There are numerous conditions related to autism-- this is why it's called the "autism spectrum." Some disorders are severe and others are mild. Very rarely does someone simply have autism. There is usually a crossover with autism and other condition(s). This is called "co-morbidity."

Our sweet little Aspie also struggles with ADHD. And mild sensory integration dysfunction. And other things, too. One of these is auditory processing. This means that it takes longer for spoken language to go from his ears to his brain. We have to repeat what we say to him. A lot. And sometimes the language gets scrambled in the process.

He has come up with his own coping mechanism for this. And we, his parents, think it's cute. No, not just cute. Absolutely adorable. His teachers find it endearing as well. As he processes the statement or request he's just heard, he'll whisper it back to himself. For example:

"Mom, where's daddy?" he'll ask.

"Daddy's at work. He'll be home soon." I'll say.

A pause. Then comes the whisper: "Daddy's at work." He'll hold still for a moment longer (quite a feat!) And then he'll proceed with what he was doing (usually, jumping off the furniture,) satisfied that he understands what I just said. This type of exchange always makes me giggle.

Spring has come, somewhat grudgingly, to our area. Our little guy was outside with daddy, working in the garden. He noticed a multitude of ants crawling across the hose reel and pointed them out to his father, who asked:

"Do you see ants? Do we have ANTS in our PANTS that make us DANCE?" joked daddy.

Our little guy froze. The wheels turned in his head. Then came his whisper:

"Ants... pants... dance................ JOKE." He processed it quite well.

And with the tiniest of giggles, he dug into the garden again.

Rainbow

When you have a special needs child, I think you worry more than typical parents about your child's future. You hope that he or she will be happy and will find a place in society. But you also hope-- really hope-- that they will end up self-sufficient. Some day. Hopefully, before you yourself end up toothless and cranky.

So I try to foster the idea that some day my little guy will have a job and a family. But I want to stay realistic. I don't want to go too far and say, "You can be anything you want to be..." when, frankly, even typical kids can't expect that. But there is always hope for bigger and better things.

And like all parents, I wonder if anything gets past the ears and into the brains of my kids. I try. And today, I received a confirmation. I think.

My little guy came home from his second day of school and was seeking sensory input. Sometimes he runs into walls, sometimes he jumps off the furniture, sometimes he pummels his siblings. Today, it was,

"Can I have a folded up, soft blanket?"

A much less destructive choice!

"Which one do you want?" I asked.

"A snuggly one." Hmm. Need more detective work.

"Can you tell me what color it is?" I asked.

"Any color it wants to be."

He thrills when he sees me crack up. It didn't help me choose the right blanket, but it sure made my day.

Now We Are Six

Dear "S",

Another year has passed and suddenly you are six years old. I could say something cliche about how time flies, but there is nothing cliche about you.

The nature of being second in birth order is quite familiar to me. I have a big brother like you. And your big brother has blazed a trail for you. This means that your parents were much more relaxed about your arrival, your nightly wakings, your tiny newborn noises.

On the day we were going to leave the hospital, I curled up with you in my bed. You were dressed in a white hospital gown and swaddled in white blankets. The light coming from the window was a muted glow due to the rain clouds. Your little face shone as you slept, and you were perfect to me. I knew that our time alone was limited. So instead of resting up for the journey home, I wept. For two hours. I didn't care if someone saw me in such a state.

And that was the beginning of a life lesson for me. In my preteen, teen, and young adult years, I cared too much about what people thought of me. It's common, I know. Lots of time spent on my appearance. Lots of time pretending to be someone I wasn't. I thought too much about what other people thought.

Before your diagnosis of autism, I was so worried. That doesn't mean I don't worry now. But no one could put a name to what was happening. Inexplicable behaviors, learning difficulties. Late at night I would kneel next to your bed while you slept. I held your hand and wept, again.

Now we have a name, a course of treatment, a goal. And I have finally learned to stop caring-- about what other people think. I don't care that you are not a typical kid. I don't care that some people consider me a bad parent for "letting" you have a fit in public. The moment I see someone make a face or a noise, I turn away. Life is too short for me to spend it worrying about what other people think of me or of you. The most important thoughts are those I have of you, and those thoughts cannot be described with words.

So, thank you for being my son. I no longer cry at your bedside out of fear or missed opportunities. You have focused my life and increased my purpose, and I will be forever grateful that you came into my world.

Mom

Heroes, big and small

There are many aspects of motherhood that I enjoy, and many I don't. Thankfully the good far outweighs the bad. I do not regret becoming a mom, for parenting has enriched my life in ways I cannot describe with words.

I love saving the day. Most of the time it is a small event. I try to keep first aid cream and band-aids in my purse for the inevitable fall and skinned, tender knees. Or when my child's feelings have been hurt and I help him through the pain, then role-play with him for the next time it happens. Which it will.

At times, saving the day means studying about my children's special needs and making a connection that will smooth their path in the future. Or it could mean a trip to the ER when there's been a lot of blood. Being the hero has helped me to grow further than I ever thought possible. But there are times when I can't do enough.

My oldest has a penchant for map-making. He continually astounds us with his increasingly detailed maps, most especially of the Washington, D.C. Metro system. These maps include a key, color-coded routes, two major rivers, different colors of green for each county, even planned lines that haven't been built yet. He has memorized the names and locations of nearly all 94 stations. He peppers me with questions daily about the Metro system, and I simply don't know the answers. It makes me feel a bit inadequate.

Recently the cherry blossom trees were in full bloom in downtown Washington, D.C. We decided to visit on a chilly Saturday, and, of course, we were going to take the Metro. As we packed, I was in full-swing saving-the-day mode. Diapers? Wipes? Full lunch? Snacks? Water bottles? Sunscreen? Lip balm with sunscreen? Camera? Jackets? Cash? Extra clothes? Hand sanitizer? You name it, I was ready for anything. Our oldest asked to bring his most recent Metro map. It was enormous, four 8.5"x 11"sheets of paper taped together. I almost said no, but decided to humor him. He folded it carefully and stashed it in his backpack.

When we stepped out of the Metro and into the city, it was windy. Too cold for standing around and admiring the blossoms. We heard the cherry blossom parade winding along a few blocks away, and we figured that we could hit the Smithsonian Museum of Natural History before the parade crowd dispersed. It was a lovely visit full of exotic orchids, massive diamonds, and enormous bugs that we held in our hands. The highlight was the butterfly habitat. I could hardly contain myself when our autistic son, who never stops moving, stood stock-still in order to coax a butterfly into his palm. It was magical.

After lunch we decided to try to beat the crowds home. We headed toward the closest Metro stop, aptly named the Smithsonian stop. As we approached, I groaned. It was swamped with people. What we didn't know was that not only were the blooms at their peak and the festival in full swing, but the city's hockey, baseball, and basketball teams all had home games that day. It was ridiculous.

We waded through the seething mass of people to get to the entrance. But when we arrived, we found that the platform had been closed to incoming foot traffic. We turned and waded through, then walked another block to find the other entrance to the station. Once again, people were everywhere. There was such a huge crowd that everyone was at a standstill. People spilled out onto the nearby streets.

The idea of waiting in that line made my blood run cold. What would happen if our autistic son had a meltdown underground, in that crowd? We would have NOWHERE to go, and he would probably injure himself and innocent bystanders in the process. My family was tiring rapidly. We were out of options. I was not prepared for this, and I was not going to be saving the day. We weren't even close enough to the station to see the Metro map on the wall or grab a paper copy.

Suddenly I remembered our oldest son's map. I turned to him and asked him to pull it out. An enormous grin spread across his face as he unfolded it and held it up for us to see. He crowed,
"I knew this would come in handy!"

We held it tightly against the wind. As we searched the map, I knew that our second child had a finite number of steps left in him. Our decision was critical. There was no room for mistakes. All we really needed to know was which direction to head, and which street to look for. Our little map-maker pointed out the closest stop, and though the street name was not on the map, he knew it.

The station was exactly where he told us it would be. He was beside himself with glee. We were able to board the very next train and were on our way home in short order. I breathed a sigh of relief.

Our map-maker turned to me with an impish grin and asked, "Did I save the day, mommy?"

Did you ever.

The best things come...

In this blog entry I described moments in my life as a parent to a special-needs child. I got a lot of feedback from the entry so I wanted to share a related moment that was immensely fulfilling. I share this on World Autism Awareness Day in honor of my sweet boy.
____________

I admit it. I'm one of those moms that uses the canned "mmmhmmms" and the "that's great, sweetheart"s when my kids are chattering away and I'm not quite there. It doesn't mean I don't love them, of course. It just means that I've got a lot on my mind. We've all been there.

And we've all been kids at one point, too. So we can't blame our own children when they use the same time-honored techniques to grab attention from the Distracted Parent.

"Mom. Mom. MOM. MOM. MOM!!!

My five-year-old autistic son employs these techniques as well. He learns well from observation and imitation. For example, I got him to say, "I love you" when he was about three years old. It was simply an imitation of my speech. But it was the last time I heard it from him.

He soon took a downward turn and was subsequently diagnosed with autism. It was crushing. But he continued to observe and imitate, including raising his voice to get my attention. He also formed his own technique that is more effective than any other.

I can always tell when his synapses are on overdrive because his voice changes. It's not a loud change or an obnoxious change. It's a quiet change. A breathy, mumbly, I'm-making-progress-so-listen-carefully change. His voice takes on a peculiar energy and excitement that my husband and I delight in.

He will breathlessly recount an event in great detail or describe how he is going to construct an invention (most frequently a rocket pack for his back, just like Buzz Lightyear.) This little voice grabs my attention better than any yell for Mom.

Recently we were sitting on the floor in our living room. I was tickling my youngest son and making lots of noise in the process. My autistic son sat a few feet away, staring intently at the floor. I wished I could get inside that head and hear what was going on. Whatever it was, it was all-consuming.

Amidst the squeals and giggles I heard his breathy, quiet voice. He said a few things that I didn't catch, then he looked straight at me.

"I love you, mom." Then he smiled.

I froze. His voice couldn't have been softer but I certainly heard it. It cut me to the soul and took my breath away. I left my youngest child on the carpet, momentarily forgotten. Crawling across the floor, I folded him into my arms. I couldn't hold him tightly enough.

He giggled as I squeezed him and choked back my tears. I had waited so long for this: a moment that was unprompted, un-canned, un-imitated. The fact that I had waited over two years for it made the moment all the sweeter.

Those who help others...

A friend of mine owns a couple of horses. I was bemoaning the fact that therapeutic riding programs (for special needs children) were few and far between, expensive, and often had year-long waiting lists. She brightened and said, "He can ride my horse." I was thrilled. When I explained to my autistic son what we were going to do, he was beside himself with anticipation.

We had an unseasonably warm February day. As we drove west to the stable, the air was almost warm in the Blue Ridge mountains. We received permission from the stable owner to use her resident Shetland pony for my little guy's first riding experience. She was beautiful and brown and her name was Minnie.

My son's attention and speech increased dramatically as we groomed her. He delighted in feeding her apples, sugar cubes, and knobby carrots. He asked questions constantly but did a great job of controlling his excitement over his new experience. He asked me a question so softly that I had to bend down and ask him to repeat several times. Finally, I got it: "What's her last name?" By virtue of the owner, we dubbed her Minnie Smith. It was official.

Then came time to ride. He was stiff as I lifted him and placed him in the saddle. He kept his arms around my neck and made little nervous squeaking sounds. I peeled his arms away and stepped back a bit. He grinned from ear to ear as she shifted around.

We led the pony partway up the side of a nearby mountain (a relative term in the Blue Ridge) and stopped at a bench someone had placed at a rise. My son puttered through the dead, dry grass and leafless trees as we basked in the sun. He was at such peace in nature and with an animal nearby.

We returned to the stable and headed home. As we drove, my friend confided in me that she had been experiencing an emotionally difficult time. This was her first foray out of the house in a week. I was dismayed that I was unaware of her struggles. But when she turned to smile at me, I saw the same joy reflected in her face as I had seen in my son's. The pony, the sunshine, and the camraderie all made for a wonderful day.

Hold on tight

It sounds just like a bad Hallmark channel movie when you compare parenting an autistic child to a rollercoaster ride. But it certainly rings true. Today I hit the part of the ride where the train brakes suddenly and one is thrust forward against the harness.

My son, in a fit of post-school exhaustion, threw his backpack onto the sidewalk in front of our house. I refused to pick it up for him and left it in the rain. Back inside, I reminded him regularly that his backpack would continue to get wet if he did not retrieve it. He refused to retrieve it. We went back and forth.

Finally I got him to go outside with me but when he realized that I still expected him to pick up his own backpack, he tried to go back inside. I closed the door and told him that he would not be able to come in until he had picked it up himself. Then the fit began. He screamed, tore at his pants, punched the glass storm door, jumped up and down, and nearly burst a blood vessel in his forehead. Each time he paused to catch his breath, I quietly reminded him to get his backpack.

It's a testament to the understanding neighborhood friends of mine that the Department of Children and Family Services was not called. His was a cacophony of sound. I wouldn't budge from my requirement that he pick up his own mess. He was beside himself. He was also getting damp from the rain and claimed that a spider was going to crawl out of the nearby plant to get him. I could barely keep a straight face.

He finally grabbed the backpack (after tossing it around the front yard a few times,) chucked it through the open front door, and rocketed himself into the house. I have learned to read the pitch of his voice. The danger note in it and his flailing showed me that physical harm was imminent. He tried to take out his little brother with his feet so I put him in a headlock. We curled up at the base of the stairs, him in my lap. I repeatedly dodged his flailing head, certain that if he made contact he would break my nose.

This was my bad movie moment-- the one where the viewer is supposed to feel sorry for me and go home depressed, or feel grateful that he is not in my shoes. I just held on (a running theme for parents of autistic children) and waited. He was screaming, "Let go of me, mom! AAAHHHHH!!! LET GO OF ME!" Then, suddenly, he went limp in my arms. He laid his head against my neck and pleaded,

"Don't let go of me, mom!"

Hot tears spilled down my face as I knew that we had made it through another loop in the rollercoaster.

A few more coins

You try your hardest to teach your kids to do the right thing. And they tend to honor you in less-than-honorable ways. Like belching at the table at a friend's house on Thanksgiving. Or pitching a fit in the cereal aisle at the grocery store. Or shoving people out of the way in the halls at church. Sometimes, you wish you could melt into the floor.

Several days ago the Salvation Army bell-ringer appeared in front of our grocery store. That tell-tale red bucket suspended from a tripod is a definite guilt trip. This year, though, I tried to turn it into a life lesson for my three musketeers. I had a bunch of quarters in my wallet so I handed some to each boy. I explained that we would be helping out people who need food and clothes.

They were thrilled-- to listen for the plunking sound that each coin made. My oldest proudly dropped his in; my middle son, curious for a moment, followed suit. Then my youngest, who was barely tall enough to reach, dropped his coins into the slot and GRABBED the bucket. He spun it around and inspected the lock carefully. Satisfied, he grinned up at the teenage girls who were ringing the bell and, by the sound of their mews, melted their hearts. You can just imagine-- "Awww! He's so cute!"

Several days later we were at the store once again. As we hopped out of the van, "S", our five-year-old autistic son, heard the Salvation Army bell ringing. He darted back into the van, barely missing the automatic door as it clicked shut. He re-emerged with something clutched tightly in his fist. Turns out he had raided a rarely-touched stash of change that he hides in a dark corner of the van.

"S" proudly trotted over to the bucket and deposited his offering. I was so touched by his gesture and wished I could explain to the bell-ringer what had just transpired. As I herded my sons into the store, I marveled at how just a few coins could affirm that indeed, I am doing something right.

Flush with happiness

Automatic toilets are the bane of my public existence.

I have three little boys in various stages of independence. One thing that they do not vary on, however, is their fear of automatic toilets. What a tragedy! Here is the epitome of cleanliness-- someone to flush for you-- and they avoid it like the plague. If you were in the stall next to mine, you'd think I was torturing them:

"Please, please, just go potty."

"No, mom, NOOOOOO! It's too loud! It's TOO LOUD!"

"Here, I'll cover your ears for you. Now go."

"The light is flashing... there it goes! It's gonna flush! IT'S GONNA FLUSH! AAAAHHH!!"

Next comes the shrieking and the stomping. That would be my eight-year-old. Now, my five-year-old doesn't bother to shriek. He simply throws all his weight against mine and drives me backward, out of the stall, and pins me against the opposite wall. Who knew that a little guy with pants around his ankles could move an amazon woman.

My five-year-old-- we'll call him S-- is autistic, and tends to anthropomorphize items, especially appliances. Toilets apparently fall into this category. I've always wondered how he classifies automatic toilets in that brain of his, besides the "avoid at all costs" category. Once he is informed that I expect him to use a public toilet, his first question is, "Is it audomadic?" This, of course, means that I have to investigate and report. He will immediately reject any automatic toilet and his bladder will turn to steel. It's disturbing but admirable at the same time.

Several days ago we took the D.C. Metro into the city for the Christmas tree lighting at Union Station. Riding the Metro is the penultimate of existence for my boys, so this was heaven. We missed the lighting ceremony, but it didn't matter! We got to ride the Metro! We had a lovely visit and ate some delicious pizza.

On our way out of the station, we made a potty stop. I cringed at the idea that we might be doing the toilet dance. But lo and behold, the people at Union Station are traditionalists. No automatic toilets to be found. I was thrilled, the boys were thrilled, and we had a successful stop.

S was so glad to have been spared the agony of automation. As we walked away from the restroom, he turned and ran back to the doorway. He threw his arms wide, exclaiming, "I love you, bathroom!" and hugged the doorframe tightly.

I think we'll be going back to visit that restroom-- er, I mean, Union Station.

Walking for autism

You may have read some of my accounts of parenting an autistic child (such as the Waterford fair story.) Most of them detail struggles and worries. Yesterday, however, was a day of celebration and hope.

Our family participated in the Walk Now for Autism, a fundraising event that occurs all over the country at different times and in different cities. We live near Washington, D.C. Our local team was one of the largest to participate. We were blessed with beautiful weather, a huge crowd of participants, and lots of metropolitan police to block off strategic streets.

An event like this is certainly one to remember. Most parents of autistic children cringe at the idea of carting their children to a place with masses of people. Multiple unknown factors combined with unpredictable behaviors equals stressed out parents. But when everyone has a child like yours, it makes life a lot easier. My son is prone to sensory-seeking behaviors like bumping into random people, turning them into irritated random people. At the walk, all he got was smiles.

Looking around at the crowd truly sobered me. It was amazing to see so many people touched by autism. There were t-shirts of all colors, some detailing autism statistics (1 in 150 children,) some with pictures of a beloved child or adult, some with positive slogans or team names. I was so touched by the hopeful nature of this event that I spent most of the walk fighting back tears.

The most remarkable memory I will keep with me is that of the families. It was usually quite obvious who the autistic member of each family was. They were the ones who were in the middle, circled around by the rest of their family like satellites. They might be adults, teens, or toddlers, but their handicaps or challenges were quite apparent.

I looked at my family, and I realized that we are not the same as many others. Our autistic son is not immediately obvious to a casual observer. He looks "typical" (the academic word for what people would call "normal") and can hold a conversation most of the time. He can walk at a regular pace without assistance. His brain can process what people say and he can act on it.

The lesson: there is always someone with a tougher road than mine. I need to be grateful for what I have rather than what I don't.

(Insert hop here)

When I was little, I had pet rabbits. Notice the plural. It started with one, then one more, and then... a deluge of baby rabbits. They were coming out of my ears. They pillaged the backyard of anything green up to 24" high. My parents were very patient, and that poor backyard has never quite recovered.

One of the things I loved about the rabbits was their random movements. They had bizarre little twitches that would hit out of the blue. Sometimes it was while they were stationary-- a random popcorn jump that would make me giggle. Sometimes it was while they were in motion. In midair, they would change direction 180 degrees and head back the other way. Those moments would send me, laughing, to the floor. I loved those fuzzy little puffballs all the more for it.

One of the conditions that some autistic children have is difficulty with sensory processing. It's like their brain struggles with properly digesting all the input that they receive from the world around them. One example is tickling.

You and I know that tickling is a form of socialization and friendly physical contact. But the nerve pathway that transmits tickling input also transmits pain input. In people who have sensory processing difficulties, their brains might tell them that the person who is playing with them is actually trying to hurt them. You can imagine the social and relational problems that would follow a pain- rather than a tickle-reaction.

My five-year-old struggles with sensory under-stimulation. He doesn't get the same input from everyday actions like you and I do. Walking, for example. To get the same amount of stimulation as a typical person, he would need to stomp, stomp, STOMP along. This sensory need leads to uncomfortable and sometimes embarrassing situations when we leave the house. He has created some coping mechanisms, some of which are socially unacceptable, and some of which are downright cute.

A recent addition to his repertoire is random hopping. Nothing elaborate, just a tiny hop. Sometimes he'll be standing nearby and I'll see him elevate for a moment. And sometimes it will be in the middle of a conversation.

"Mom, at school today, I used paints ^hop^
and made a pumpkin ^hop^
and it GOT ALL OVER MY ELBOW ^hop^ ^hop^."

This new habit of his is quite endearing. I hope he keeps it up for a while. It makes me want to hold him close and squeeze him tightly, a sensory experience that we both enjoy.

^hop^

Sticks and snails and puppy dog tails

Just yesterday, I was discussing with fellow blogger Akaemi about how I prefer boys to girls. Now, I could be a little biased. But I declared to her, "I prefer dirt and ER visits to the emotional games that girls play." Boy, have I got to be more careful about what I say.
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Before-school preparations consume my peak multi-tasking skills. I'm waking children, changing diapers, dressing children, checking homework folders, preparing breakfast, packing lunches, and trying to keep the house from burning down simultaneously. I've gotten pretty good at it. But I am not a superhero.

This morning I was helping my kindergartner put on his shoes while talking on the phone with my husband about paperwork. My two-year-old had just whomped me in the glasses with a large plastic stick and I think he was feeling guilty. So I didn't notice when he disappeared around the corner.

Suddenly I heard a cry. Not the "I hurt my foot" cry or the "my brother bonked me" cry. It was the "I'm really hurting so come to me right now" cry. And then he yelled out, "Dere's blood!" I hung up on my husband as I dashed into the kitchen. And he was right. There was blood. All over his hands. He held a knife in one hand while the other reached out to me pleadingly. The blood was already pooling on the floor. The poor penitent child had tried to help me slice an apple for the lunches.

I grabbed a paper towel and tried to staunch the flow. I checked his hand and saw just a slice across his index finger, but there was an alarming amount of blood. We soaked through one, two, three paper towels. I looked up at my other boys who were watching fearfully. I had to make a decision: take them with me to the doctor/hospital or send them off to the bus alone? My seven-year old helped put pressure on the wound while I finished packing their lunches and sent them out the door. He is my little hero, taking his autistic five-year-old brother to the bus for me so I could concentrate on the little one.

I finally stopped the bleeding and checked the wound. It was borderline stitch country. So I packed him off to the pediatrician. A nurse and a doctor both said he needed stitches, so I headed to the local pediatric ER. The nurse there wasn't sure and she brought in a doctor. He wasn't sure either so he brought in another doctor. All in all, it took one pediatric co-pay, one ER copay, and five medical professionals to decide that stitches were not an option. Apparently the skin on fingers heals differently than the rest of the body, especially on children. Plus, kids regenerate faster than a lizard's tail. They sent me home with a package of Steri-strips and a pat on the back.

After I strapped the little one into his car seat, I plunked down into my seat and heaved a great sigh. I was already exhausted at 9:00 in the morning. I turned to my freshly bandaged two-year-old and he smiled at me. Then he said,

"Thank you, mommy. Thank you."

Yep, I still prefer boys.

A quarter past crabby

We hauled our gaggle of boys to a fair in a quaint little town called Waterford today. The town is filled with quaint houses surrounded by quaint lawns with quaint old, well-preserved cars out front. It was a lot of fun, namely because we stayed far away from these quaint little houses that, if exposed to our brood, would no longer carry the quaint label.

Instead we enjoyed everything else there was to offer. There were traveling minstrels and a squeeze organ playing, of all things, "Country Road" by John Denver. Periodically cannons would fire and scare the heck out of our little guys. We watched a blacksmith, working over coal, twist and turn strips of metal into hooks. All the vendors at the fair wore costumes of yesteryear and yore. There were bands were tucked into every corner, singing gospel and folk and strumming their mandolins. We even watched a fife-and-drum group, dressed in Confederate garb, beat out "When Johnny comes marching home again" and "Dixie," among others. During that last song, the vendor ladies nearby stood up, in their hooped skirts and bonnets, and sang the words proudly like they were the national anthem. At moments like these I am reminded that Virginia fought for the South in the Civil War. It's easy to forget when you live in a very blue Northern Virginia.

I had a great time. The older kids, however, complained during most of the fair. My legs are tired, or I'm hungry, or I want to go home. Even my husband wasn't too thrilled to be there. We decided to call it a day after about three hours. My two-year-old had been an angel in his backpack carrier, never muttering an ill sound (though he did growl a little.) We bought our seven-year-old a ginger ale from the local brewer's table, which was served in a beer bottle. Great. We looked like fabulous parents.

During the entire fair, we had walked through roped-off streets that were usually used for normal car traffic. Our autistic (middle) son had gotten used to the idea and enjoyed it quite a bit. Now, as we headed back to our car, we had to balance carefully on the edge of the road. There were cars whizzing by quite close so I held his hand tightly. He was confused about the change in family policy-- why couldn't we walk on the street now? I had to rein him in and explain repeatedly about the danger. We were all tired and I could hear in my husband's tone of voice that he was near the breaking point.

Our middle son began to growl and grunt loudly between his observations of the locals and their homes. This is something that I am so used to that I don't even notice. But there was quite a crowd exiting the fair, and I noticed people looking at us curiously. Their amusement soon turned to pointed stares when they heard my repeated injunctions. Many people who notice the interactions between me and my child jump to the conclusion that he is a naughty boy and I am a permissive parent. At this point I typically keep my eyes on the ground and just pray that we get to our destination as soon as possible. I would like to say that my feelings are not hurt that people judge me so harshly, but that would be a lie.

My son then proceeded to bump into me repeatedly, seeking what is called sensory stimulation. I wrestled him to the side of the road over and over, calmly repeating that he could get hurt. I forgot to remind him that his mommy could get hurt as well. At one point he bumped me so hard that I stumbled into the road, and I called his name sharply in alarm. My husband, who does not have the extensive experience of being in public with our child that I do, barked his name as well and grabbed his other hand. A couple walking in front of us turned to look at us again. I kept my eyes straight forward and wished we could fly.

The wrestling continued into the grassy parking lot. There was a gravel drive for the exiting cars, and my son tried to throw himself at it. I had a few ounces of water left in a bottle and told him I would pour it over his head if he did not cool off. My theory was that distracting him from one sensory problem with another sensory experience might derail him from his fixation. He did not stop so I poured the water. He immediately stopped his wrestling but then proceeded to howl about the water dripping from his hair. The couple turned to stare again, and my husband barked at them, "He has autism. You don't need to stare like that."

We made it to the car without further ado and collapsed into the seats. On the way home, our middle son continued to howl, and when I finally calmed him enough for him to speak, he cried, "I want to go baaaaack!"

All in all, it was a typical experience for a family that copes with an autistic child. I was able to shake the day off rather quickly. But my oldest son watches and learns from us, and it makes me wonder what he will do in future situations. Will he ever jump in and defend his brother? Or will he learn to keep his eyes on the ground? Will my husband and I ever figure out which of those two is the best thing to do?

Deuteronomy

Deuteronomy is the fifth book of the Old Testament, and includes a covenant between God and the children of Israel. I have a five year old who has been diagnosed with autism. If you have not heard of autism, I must ask you to first climb out from underneath your rock and tell you to turn on the T.V. or radio or surf the web. We've all seen the fuss about it lately and I am glad for it.

So I will now set forth a covenant I make with my five-year-old-- not fifth child, like the book-- but five, as in years.
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I will try not to be angry at you when you jump off the couch (right after I tell you not to) and break your foot.

If you hurt someone on the playground, I will try not to sound like I am making excuses for you. Instead, I will explain how your brain works differently.

When you hold completely still, move your eyes around rapidly, claim that the room is dark, and declare that your eyes are flashlights lighting up the corners, I will laugh at your joke.

When you paint a sun with many colors, because that is where rainbows come from, I will love your creativity.

When you crash into me repeatedly and then curl up into a fetal position on my lap, whimpering like a puppy, I will recognize your special need at that moment.

When you wrap the metallic sunshade from my car around your body and wear it up and down the stairs because it's your elevator, I will marvel at your ingenuity.

When you keep batteries on your nightstand because they will power your dreams, I will wish I had your imagination.

When you won't eat non-threatening bits of chicken but will eat meatballs rolled in grated Romano cheese, I will not shrug.

When you pour an entire bottle of Gatorade over the T.V. because it needed a bath, I will not raise my voice.

When you get angry because your Starburst has dissolved in your mouth, because you, "...didn't want it, so don't give it to me again!" I'll wait until you've rounded the corner to shake my head in befuddlement.

When you want to touch every baby's head and are incredibly gentle about it, I will always smile.

When you bring home your first handwritten "A", I will celebrate with you. And sigh in relief.

The first time you hug me and tell me that you love me, I cannot promise that I won't break down in tears. That is one covenant I would not be able to keep.