A Wish for 2011

It has been ten Christmases. Almost ten New Years. You were born in January of 2001 and it is hard to imagine that it is almost 2011. I miss the boy I thought you were going to be. The handsome red head with broad shoulders and laughter. Someday you would break your mother’s heart as you grew up and grew away. I would pine for the soft baby I held in my arms, with eyes fixed on me like milky green-blue marbles and pink, perfect lips. You would grow older and wiser and leave me empty and alone.

But it has been ten Christmases. And almost ten New Years. And you are still a little boy, soft and tender. I have had to let go of the boy you were supposed to be – a heart throb and charmer and remain in love with the boy you are, frozen and still, a five year old trapped in all the makings of a ten year old.

I watch other children watch you in wonder and amusement, your body hopping and snapping like a muscle spasm in a giant’s thigh. I want to protect you and cover their eyes and tell them they don’t know the mighty heart that beats within the walls of your small chest -- a boy who, to know fault of his own, lost pieces of himself, as easily as gritty sand falls through fingers on an ordinary day at the beach. You were somebody one minute and somebody else another.

I loved you from the moment you were born, a twisting, wet seal pup on a scale with a flash of red hair and a determined holler. You were a piece of me, ordered up at a deli counter to be weighed and wrapped and snuggled in my arms, newspaper print leeching onto my fingers, tattooing your story forever on my palms.

If I could make you whole I would. I watch you struggle and cry and I stand helplessly – no parent should go through that. I wish a mother’s love could mend the cracks and repair the seams and keep you whole once more. I can’t help but feel that I have let you down, somewhere along the way and for that I will always feel the rugged braid of scar tissue that interrupts the smoothness of my heart.

But who is to say that it is all final, that you won’t rise like the stealthy Phoenix from gray ashes and shake off the blinding dust. That you might soar once more, your heart and soul scraping against the belly of the sun. It’s the least you deserve, little one, for the frightening and dark world that you have grown to know. Let this new year offer you more hope and opportunity to feel more akin to those who love you and live in this world. Let this new year welcome you home to the arms of those who never tire, waiting patiently for your return.

Band of Mothers

Tonight I went to my oldest son’s holiday performance at the school he attends. The bleachers were pulled out and folding chairs were lined up and down the fading, scuffed gym court. There were performance by violinists, a jazz band, a choir and a singing group. All the oldies and goodies and some old songs with a new twist. I arrived with Sean in tow, my husband travelling for business and no kid sitter available.

Sean was antsy from the start. He needed to go to the bathroom but wouldn’t because the school was too crowded. He pulled and yelled at me and I tried to manage him in an ocean of unfamiliar faces. My nerves buzzed like angry wasps circling a nest and I felt myself perspire under my arms and on my neck. I wrestled him into the gym and found a spot on the bleachers next to the exit. I took off his jacket and put on his headphones to help muffle out some of the noise of the crowd settling into the gym. I could feel the sting of tears burn in the backs of my eye sockets, swallowing hard and trying to breathe my way around the curb of pain that parked in my throat.

He stood up suddenly with his arms opened and said my neighbor’s name softly. I saw her walk up and hug him, his body softening and the edginess fading. He told her he wanted to hop and she asked if it would it be okay to take him for a little walk. I said of course and quickly handed Sean off to her realizing that what she offered to do was quite a favor considering Sean’s uneasiness with the crowd and the difficulties that come with managing an autistic child in a nightmarish situation.

As they left I thought, “What am I thinking? Why did I just pawn Sean off on her like that? That wasn’t very nice of me to do that.”

She came to watch her daughter but instead she was throwing a line into the swell that had gathered around me and she kept me from drowning. A few minutes later she came back with Sean, his hands wrapped in hers and all of his tenderness leaning into her. He was so thrilled to see her there (and so was I).

Shortly after, one of my very closest friends walked up and Sean hugged her too. Another remarkable soul telling me that she could take my oldest home (completely out of her way) if it was too much for Sean. I felt the stress slowly lift with the steaminess of the gym air and felt my heart rate slow down to a more reasonable pace – thankful for the comfort of friends.

We watched the kids sing and dance and I thought how fun it was for my oldest and then I became a bit sad for Sean realizing that he wouldn’t have the same experience. Without the kindness and regulation of my neighbor’s arms around Sean I don’t think he would have even stayed to watch. She kept him in his skin and allowed me to see my oldest perform. I watched Sean watch the older kids, his red hair ruffled by his headphones, his cheeks ruddy and his eyes clear and polished. And I did feel a pinch in my heart - -another rite of passage that he most likely wouldn’t take part in – the idea of a crowd of such size in a packed gymnasium with drums and trumpets and sweetly high-pitched adolescent voices – the stimuli too great for my youngest to ever endure. He would most likely never be a boy in black slacks and a matching shirt swaying and singing with all his heart on a stage with friends. This is one of those moments that I probably took for granted when having children and the reality of the difficulties that my son will face throughout his lifetime leaves me at a loss for any useful words.

He lasted the whole hour and some minutes, much thanks to my neighbor who held him closely and rubbed his back. He was excited to see her daughter who gave him a high five and a warm smile. I couldn’t help think how five years ago, when we moved next to this family, I had no idea how much their friendship and support would mean to us – how much we would come to rely on the goodness of their hearts.

And I am reminded of my dear friend who gave Sean a hug and me a “get out of Jail” free card; who four years ago came up to me after Sean kicked me and yelled at me in front of a crowd at my oldest son’s soccer game and put her arm around me and just walked with me while I cried out of embarrassment and shame. I had only met her once before when our boys got together to play. She rose from a crowd of people that didn’t quite know what to make of the scene unfolding near the swings and with such tender compassion and courage saved me from public heartbreak and gave me a soft place to hang my head and cry.

I am amazed at how the people that mean the most to me in my life are people that I have connected with through Sean. That somehow he is my beacon, a sweeping light in a sea of darkness bringing into focus all the details of survival and constantly reminding me that all we really have in the end is each other and our innate ability to help when we see panicked arms hit the air. That without this little boy in my life I might not know such truth and beauty and strength in people and what a privilege that truly is.

As a teacher reminded me in class the other day -- stars are out all day long but it takes darkness to actually see them. That we are able to see the moon so well in the winter because the trees have lost their shaggy coats and offer up more space between their naked arms. And that without Sean and the chaos that often comes with his disability, I wouldn’t recognize such incredible peace and deep friendship so readily. He is a blessing. I have to remind myself of that, particularly during the dark days, he is a blessing, a torpedo of silver lighting up even the gloomiest night.

A Lucky Mistake

Yesterday I had a calendar mix-up. I looked at an appointment card I had and it said Monday, 12/1 10 a.m. Problem was that it was Monday but the date was 11/29. So which was right – was it indeed Monday or was the appointment Wednesday, 12/1? I called but only got voice mail. I decided it was best to drive there to just be safe. My schedule was sorta flexible and a fifteen minute drive to the east side wouldn’t be too disruptive.

As I drove across the Morrison Bridge to the east, I saw Mount Hood glowing like a polished trophy, cast in shadows of blushing silver. To the north, Mt. Saint Helens popped like a dreamy bundt cake swirled with velvety white frosting. I felt my heart bump against my chest. How lucky I was to see this. Usually late November means that we are socked in with heavy gray clouds, smudged fog and the mountains seem lost to us until late spring. But not this day and I was surprised and happy to be able to catch this seldom seen glimpse. I felt lucky. Like this was a good omen.

At the same time I was listening to a song that I was really enjoying. When the mountains came into my view the words, “I am not the mistakes I carry. I am who I am” sang out from the speakers. It was a strange and serendipitous moment for me. I felt tears in my eyes and my fingers clenched the steering wheel. I have been trudging along these days, feeling overwhelmed and hurried through the holiday madness, watching the slippery sand free-fall through the timer and feeling panicked. And yet, in that moment, time stood still, worries melted and I felt real joy. As if something greater than my small life was saying,

“Slow down. Hang on. Look East. Look North. Listen to the words. There is greatness and beauty in your life and you are not your failures.”

I felt a stirring in my bones, maybe in my soul that this was a moment to be had, an instant to take pause and breathe – to bask in the undisturbed peace that exists in the natural world and to let all the synthetic noise and clatter of the holidays fall silent.

Sometimes I think I might be losing my mind. I am always trying to make sense out of this life of mine. Why things are the way they are. And I can’t help but to trust that grace and beauty and hope are within the distance of my tired, wrinkled fingers. That I can feel them like I can feel my boys heartbeats when they fall fast asleep in my arms.

And I don’t know what that “true” meaning holds for me. I do know that it has something to do with my children, especially Sean. As much as it has been a rough road with Sean, it has been one that has stretched my mind and heart like pulled taffy. He continues to shake me out of my comfort zone of a one dimensional life and pushes me into an ocean of tumble and salt and wonder. I don’t know if I would be as happy and fulfilled as I am with him as I would be without him. That means something, when I consider all the heartache and break we have had raising an autistic child. He is the sweet and sour in our lives. He makes the good days better because we have lived through the rough days and have crawled out on skinned knees and hearts.

When I arrived at the office I was told my appointment was indeed, Wednesday and not Monday. I didn’t mind though. I wasted “valuable” time but what I saw and what crept into my mind and heart was worth it. If I didn’t check on the appointment I wouldn’t have travelled in that direction, to the forgiving east and the vast north, and I wouldn’t have seen the muscle of mountains and shimmering sunlight tickling the horizon. I wouldn’t have heard the song that told me to let go of my mistakes, that they are not who I am but rather a small part of my history. I wouldn’t remember how lucky I am to have all that I have. I am lucky. Despite what others may think of a mother with an autistic child. I am one lucky person.

Here Comes Santa Claus

Last Sunday we took Sean to see Santa. This time we did it differently. No giant shopping mall where the line snakes for miles, weaving through ropes with families pressed against other children and parents anxiously awaiting their turns to tell the big guy in the red suit what they would like for Christmas. We have done this in the past. Sean has some really good strengths. Standing in a long line, packed like sardines, waiting patiently is not one of them. Usually my husband and I would take turns chasing him under the red velvet ropes, catching him mid-hop and pulling him back into line as he threw elbows and arched his back. We were the family in line that seemed to be standing on an active earthquake fault line – swaying into others, my hips and shoulders brushing into moms and dads and my constant apologies falling flat. It got to be such a stressful tradition that we were ready to say the heck with it.

Luckily, we got word of a Santa that was going to be available to kids with disabilities, including autism. This would have to be one understanding, patient, tolerant Santa. The thing with autism is that if you have seen one child with autism then you have seen one child with autism. Autistic children are like delicate snowflakes, similar and yet no two are ever the same. Who is to say how each child may react? Often their reactions differ greatly.

The clinical director, Kathi Calouri and the program director, Eric Hamblen at PACE Place in Beaverton, Oregon (http://www.paceplaceinc.com/) arranged to have a Santa for their many clients who, year after year, have struggled with taking their disabled child/children to see Santa – a typical tradition that most take for granted. In fact, most families with children who have autism don’t even bother. The unpredictability coupled with the lack of understanding and tolerance can make a holiday must-do into a CHRISTMAS NIGHTMARE. It’s no fun when your child hops around Santa and stims, or bites Santa or screams at the elf and the others in line. It’s even harder when your child is not a feisty three or four year old but a growing eight or nine year old. As the parents of these children we can see the fright building in their eyes and the tiredness in their bodies from trying to hold still in the noise and crowd. We are constantly preparing for the impending storms that hit hard while out in public.

We paid for a private fifteen minute time slot to bring Sean into PACE Place. Kathi and Eric were on hand, along with a photographer, a wonderfully charming Santa and an Elf. There was no line, no others milling around waiting for their turns and my child’s excited hopping and yelping was welcomed. We had the opportunity to take a family picture but since my oldest son was at a hockey game and I came in sweat pants and a hair that was in desperate need of a brush, we decided to just get the pictures with Sean. The photographer took a dozen pictures while Sean talked to Santa and hugged him repeatedly. There was no rush, no uncomfortable glances among the others and no heartache for my husband and me. In fact, we were quite happy to see our boy participate in an activity that was slowly becoming impossible to accomplish. Our handsome boy was all smiles enveloped in the arms of Santa and whispering that he would like a Jakers DVD for Christmas.

I am thankful that there are people in this world that share their heart and compassion with families like us – that understand how tricky and lonely the path can be that we must travel and are happy to offer an elbow and share with us a knowing smile. As we drove away, my husband said,

“I’m glad you signed Sean up for that. It’s good to see him so happy.”

Autism makes life a lot tougher for all of us. But it also makes moments like these more beautiful and tender -- a glossy photograph capturing my boy’s smile and happiness while being held in the arms of a kind Santa is one of the most precious gifts.

About A Weak Back

The other day, after picking up baseball cards and missing socks and Halloween candy wrappers from my oldest son’s bedroom floor, I felt a thwack, like the give of a folding chair collapsing. Then I realized that I couldn’t stand straight, my back in the shape of a lower case r, hung over the bottom half of my body. It had felt like a giant punch landed on my lower back and tailbone. Crap. I don’t have time for this. I went to my knees and rolled over onto my back trying to stretch out my spinal column, arms and legs. Then I turned over and did the sleeping child yoga pose. Back to my feet and I could barely stand. I scurried around trying to complete a few more tasks before the carpet cleaning guy was coming. I couldn’t cancel – the rugs had been so neglected that I was quite sure I could start a plague from my kids rolling around on the floor. I pushed the vacuum cleaner, each tug a pierce jab to my back and tried to pick up a couple of chairs and an ironing board and place them on the tiled kitchen floor.

I knew how it started. The past weekend we had gone down to Corvallis for Sean’s soccer match. It was the largest gathering of soccer teams for the Special Olympics of Oregon. Sean was ready to go in his cleats, shin guards and a soccer shirt that fit him like an evening gown – if only he had the right belt and matching hand bag. He is by far the littlest on his team and was one of the youngest at the tournament. He had three games which his team managed to win two and Sean had three goals – unfortunately all goals were scored against his own goalie. Sean didn’t seem to mind as he rolled on the ground, hopped, cheered and clapped – I was certain he’d get a flag for over-celebration but didn’t know if it would count since the other team was already being rewarded by Sean’s misfires.

In between matches Sean would run up to me at full speed, then vaulting his strong, muscled body toward my open arms and I’d catch and spin him. My oldest wanted to get in on the fun and nearly mowed me over. We decided that he could hop on my back instead. So between entertaining Sean and trying to accommodate my growing oldest son by piggy back rides, I had pushed my back to the brink. It only took a few bend overs (BEND AT THE KNEES! I always forget this) the following week to find myself crumpled like a question mark.

I shuffled around the house, greeted the carpet cleaner guy as he surveyed the carpets.

“When was the last time you had these cleaned?” he looked up at me after finishing up in Sean’s room, the worst swag of carpeting in the house.

“A year ago.”

“Really?”

“Yeah. The boys drag everything in the house and with all the rain and pine needles it gets pretty bad.”

“Maybe you should do it every six months,” he said, checking off a million recommendations --- enzymes, extra spot removal, scotch guard...

“Yes, definitely,” I said crouched over like I was staring intently at my own belly button.

In the evening, I made it to my writing class and picked up my oldest from his hockey practice. All and all I muscled through, although my oldest looked at me strangely and asked, “Why are you walking like that?”

I thought of some smart ass comments, like, “trying to mix things up,” or “you don’t think this makes me look younger?”. Realizing it would be missed on him I said, “I hurt my back.”

“How?” he asked almost in disbelief. He might as well throw in, “because God knows you don’t do ANYTHING.”

“If you must know, part of it was from lugging you and Sean around at the soccer tournament. You guys are too big to be jumping on me. And I was cleaning up the garbage on your floor. Is it really that hard to put socks down the laundry chute and to throw out wrappers?”

“I’m sorry,” he said, and he did feel bad seeing me hunched over the steering wheel.

Luckily, today I am feeling much better. The back is stiff but at least I look closer to a forty year old than an eighty year old. I’ve done stretches, filled up a water bottle with hot water every night, took Aleve and slept one night on the floor (my husband suggested this but I think he just wanted the whole bed to himself because I felt pretty stiff the next day.)

It scared me though. What would I do if I was debilitated and couldn’t do the things that have to be done? Sean doesn’t have the capacity to understand that my back had gone out. He has needs and he is short on patience and understanding – it’s the nature of autism. My oldest has a schedule like a CEO of a major corporation. There are hockey games, practices, clinics and school, choir, homework, piano lessons, science projects, friends and birthday parties.
Seriously, there are times I feel like the activities director on a Disneyland Cruise ship. I have to be able to focus and react even though the years are ticking by and the paint is starting to chip.

So what if I did my college term papers with a Smith-Corona typewriter (the last two years we did have computer labs and I owned a couple of FLOPPY discs and printed out my assignments on a charming dot matrix printer); or the current kid-sitter who was born while I was in my early twenties living it up in Chicago. Yes I can get directions from an actual road map and dial a rotary phone and open my garage with my bare hands and drive a stick shift – these are feats my kids will never know as they push buttons, make voice commands and download information to their I-Pods and GPS devices. I didn’t even hold back on the middle school kids who showed up on Halloween night as “80’s girls”, big hair, tights and blousy shirts with large belts and lots of pink lipstick and sparkling eye shadow. I gave them the good stuff, the Reese Cups and Snickers. Secretly I felt really old and somewhat ridiculed and wanted to throw my head into my son’s pillowcase of treats and eat my way to the bottom but I managed to stop myself. It helped that he was in the room and that at first glance all I could see peeking out of his bag were Sour Skittles and an unraveling Tootsie Roll. There’s no saying what could have happened if I was faced with an Almond Joy and Kit Kat.

But I digress. We are all growing older. Each day. I can’t stop it but I can try to make the most of it. I just have to remember the boys are getting big and that I can’t be a human trampoline for them. Other than that, I’ll try to re-commit to yoga and continue to take my vitamins. And to laugh. Somehow that makes everything a lot easier.

A Dog Day Morning

Early this morning I went to drop the puppy off at the vet. He’s six months old and is officially ready to be neutered. There was a woman behind me with a French bull dog, her eyes squinty and red. She smiled meekly and said,

“I’ve been crying all morning about bringing Midge in here for his neutering. I was supposed to do it 3 months ago but chickened out. I feel just terrible.”

I smiled weakly and tried to sympathize with her and her dog Midge, who clearly had no idea what was in store for him, his tongue sticking out and his tail wagging. “It will be fine.”

I was glad she wasn’t there earlier when I was questioning the billing.

“What’s this extra amount for right here, this $140?”

“Well we can’t seem to locate his second testicle. It hasn't descended. It may be in his abdomen.”

“And that’s going to cost an extra $140. Do I have any other options? Does the testicle need to come out if it’s lodged in his abdomen? If it’s in his abdomen can he still be a dad?”

“He can still get a female dog pregnant.”

“Really? It’s just, it’s a lot of money and I have a lot of expenses. I have kids and all. Can I get a second opinion?”

“Well, you are on a wellness plan and you’ve already made payments toward the neutering. Another vet will tell you the same thing and it will cost pretty much the same. We can’t move forward unless you consent and it’s in your dog’s best interest.”

As I talked I noticed the dog nurse getting more irritated by me and my questions. Don’t get me wrong. I like the puppy. He’s oodles of fun and companionship. And I’m all for the neutering – it’s the responsible thing to do and if it means less humping and marking his spot I’m totally game. But learning that he has a unique situation that may require more invasive surgery? The odds once again not in my favor? The puppy’s situation not typical? Seriously?

As my girlfriend, who has two disabled children said,

“When they start with, ‘the chances are minuscule,’ I always have my guard up.“

We are moms who have the one child in one hundred and ten that has autism. We have the one boy in seventy that has been diagnosed with autism. We are part of the statistic. We are not the lucky ones nor are our boys who have to fight everyday to try to feel part of this world.

I sign the papers of consent and hand them to the dog nurse and give him the leash.

“Do you need anything else from me? I need to split and get my kids off to school.”

His arms folded in front of him, he takes the leash, his face still in a frown, “Would you like to say good-bye and good luck to Duncan?”

I must look flustered, my reading glasses perched in my messy hair, sleep still in my eyes. Its 7 a.m. and still dark outside. I wave at my puppy who is more interested in the dog nurse’s shoes and pant cuffs and bend down to scratch his floppy ears.

“Be good, Duncan.” I say, confirming the dog nurse’s suspicion that I’m a crappy pet owner.

“When can I pick him up?” I ask, getting ready to leave.

“We’ll call you when he‘s ready.” He says curtly.

“Yeah, but I have a class tonight and so could I get him by 4 p.m.?

The dog nurse has picked up Duncan, cuddling him and letting him lick his arms and face. I want to tell him that Duncan eats dirt with that tongue and licks sidewalks, garbage cans and curbs but I stop myself.

“I couldn’t possibly tell you right now,” he says exasperated with my line of questioning. “We can call you when he is in recovery. “

“Okay, well my class gets out at seven and I have to pick my son up from hockey so if 4 p.m. doesn’t work I can come by around 7:30 p.m.?”

“We close at 7. We'll do our best to get him ready before 4 p.m. But if it’s later than 4 p.m. you’ll have to make other arrangements.” He says leaving me with the tear stained lady and Midge.

I have somehow offended his sensibilities. What I want to say is,

“I’ve got bigger fish to fry. Yes, my dog is great. The kids seem to like him and aside from his marking the bathmat and Sean’s stuffed animals with his stinky pee, he’s a good dog. But he’s a dog, a family pet. He is healthy except for the hidden nut. And I have a child who has limited options. If I’m going to spend money it will be with my child’s best interest first. It’s the least I owe him. So be patient at my mulling it all over, please.”

I want to tell him that just yesterday at an appointment for my migraines; I told my doctor that I couldn’t do a colonoscopy. He told me I am at a higher risk and that I need to get screened at age forty. I told him if I have an extra four grand to spend it will be on my son. I feel fine and I don’t have time or money to worry about cancer. He told me my insurance would cover it. I said,

“Yes, maybe, once I meet the ten grand deductible which after today I’m looking at only $9800 left.”

He told me to save up for the procedure. I smiled and said,

“Treat myself to a colonoscopy. Sounds like Christmas morning.”

He laughed and said, “I’m serious. Get one in the next year.”

So, dog nurse, forgive me if I seem a little high strung over the billing. Life is about priorities and sometimes we have to say unpopular things that may not go over well with others. We are just trying to do the best we can with our resources and our situations. Yes, I’ll pay the extra money, of course I will. But just because I’m not torn up like Midge’s owner and I balked over the extra $140 doesn’t mean I am a bad pet owner. Just because I didn’t drop to my knees and take my little puppy into a kissy embrace and whisper with tears in my throat, ‘be brave, little one. Mommy loves you,’ doesn’t mean I lack affection. I happen to be a pretty good pet owner and that says a lot considering the pets we owned when I was a kid roamed the neighborhoods and slept in the garage and ate scraps from the table and drank out of the creek.

I just have a different perspective. That’s all. My dog has a charmed life. He eats yummy puppy food, sleeps on a pillow, runs and is joyful. My son, on the other hand, struggles everyday to fit in and to be happy. I can’t muster up the tears for my lucky dog who is getting a fairly normal procedure done. It’s my boy who I cry for when I see how much of life he misses out on because of autism. To me, that’s my worry, that’s my true sadness.

Forgiveness

The past few weeks have been a whirlwind. My husband and oldest went to China together for a trip of a lifetime. They travelled to Shanghai and took a train to Beijing and made visits to many of the ancient wonders -- The Great Wall, The Temple of Heaven and the Forbidden City. They went to a tea ceremony and visited the World Expo back in Shanghai (my oldest desperate to visit the Canada Pavilion to see some hockey. He was equally impressed with the Czech Republic which built part of their pavillion out of of hockey pucks -- travelling all the way to China to see hockey? Go figure.)

After nine days they returned home for a day, each of them heading out the next day for different trips. My husband was travelling to Las Vegas for a trade show and my oldest was going to Outdoor School at a camp in the Columbia Gorge near the Sandy River. Another week without the anchors at home. Another week feeling adrift.

Meanwhile, Sean seemed to struggle more in their absence. He liked having me to himself but I was becoming worn down and less patient than usual and that made him frustrated and unsorted.

There was one day that was particularly difficult. I went to get Sean from the bus and he seemed to be in good spirits. We took the puppy for a walk and stopped at the park, the weather was unusually sunny and crisp. He seemed happy.

When we left to go back home he started to unravel. I don't know what it was but he became anxious, his body going limp in places and his mouth twisting. He started to pull at his pants and lose his arms in his sweatshirts, caving at his knees and hitting the ground followed by whining, then yelling and screaming. I went to him, the puppy pulling in the opposite direction, but Sean rolled away in the middle of the park driveway, coming up to his feet and running into the street. I panicked. The puppy wanting to go the other way, my left hand engaged with a leash and only my right hand free to reach Sean.

"Fine," I said, "you have your fit. I'm going back."

I thought he'd follow me, shrug off his sticky thoughts or whatever was making him so upset, and turn to catch up with me but he started running after a car. I could feel people starting to watch us, his bare bottom peeking out of the top of his pants, his arms lost in his shirt, and his sleeves wagging like wind socks. I rushed back to him, dragging the puppy with the leash, and righted his pants and tried to grab him with my arm, pulling him into me. He was thrashing and scratching, his eyes not his own, but wild and flecked with yellow, watery with tears. I pulled him as far as I could toward the parking lot where I had parked the car. He continued to scream, scratching my shoulder and I could feel the burn and the sharpness of his nails (I meant to trim his nails the day before) and dragged him to the car.

Any body walking by might have thought I was abducting this child. He was hitting me and snarling and I was strong-arming him into the car, pushing him down into his car seat, my shoulder and arms chalky white from scratches, dotted with blood. I couldn't talk because I was holding back my tears and anger and disappointment.

I buckled him in and got into the car. I was certain people were writing down my license plate numbers reporting me to the authorities -- kidnapping of some sort. I couldn't drive right away. I was trying to take deep breaths, blocking his arms and legs that were forcing there way past the head rest of my seat.

"Stop it!" I yelled. "I can't do this, Sean. I can't do this anymore," and I felt the tears come, my voice hyperventilating and my body shaking with fear.

I drove a bit down the street and called my husband.

"What's going on?" he said hearing the shrilling yells.

"He's out of control. I don't know why. What am I supposed to do? Do I take him to the hospital? Should I take him to a police station? What am I going to do!?"

My husband was in Las Vegas, unable to do much and only imagining the chaos.

"I'm sorry. Can you make it home with him? Just make it home and try to calm him down when you get there?"

"I'm tired. My arm is bleeding. I am so tired of this. We have to come up with something else. This isn't working."

In the back Sean screamed, "I hurt my Mommy! I hurt my Mommy!"

"I know, I know. Just call me when you get home, okay?"

I drove further and Sean came up between the front seats and plowed his small fist into the side of my nose. The pain so sudden and unexpected that I stopped the car and pulled over to cover my face. More noise and rocking from the car. Surely somebody is calling the police. I took another minute to get him back into his carseat and drove the rest of the way home, my nose and arm flaring with pain.

When we pulled into the driveway, he softened. He was muttering over and over, "I am sorry I hurt my Mommy. I am sorry."

I brought him into the house and hurried over to my neighbor's. She has a lot of experience in social work and knows our situation well with Sean.

"What do I do? He was out of control and loud and screaming. I think someone called the police. I don't want them to come and take him away. I don't want any problems."

She assured me that that would not be the outcome. She told me to call his teacher to see if he had a rough day. Follow up with his doctor to see if I needed to take him in. I did both -- leaving messages with the school and the doctor's office while he lay in a heap on the floor.

When he settled down I ran him a bath and fed him. He seemed hungry and tired. He thought he left his backpack at school but he didn't. "That is why I was so sad, Mommy. I thought I left my backpack on the bus or at school."

When I tucked him in I sat down on his bed and said, "Sean, you can't be like that, do you understand? You could have hurt yourself or somebody else. You hurt me, Sean. You scratched my arm and you hit me hard."

"I scratched you?" he said, surprised. How lost he had gotten in his rage.

"Yes, and it hurts." I showed him my arm, dotted with scratches and cuts, swollen at the top.

"No more, Sean. You can't be like that. You have to control yourself better."

"Yes," he said sleepily.

The next day after school he was stimming, going through his routine questions,

"How do you spell Brad? Is there a P in Brad? How old is Duncan?"

I went about putting dishes away, robotically answering the questions. Then he became silent and I looked over at him, his eyes big and doughy staring past my shoulder,

"I am so sorry I hurt you."

I tried to get his eye contact and moved my head into his field of vision,

"Are you talking about yesterday? Is that what you are sorry about?"

His eyes locked with mine, and I saw real pain and compassion in his eyes,

"Yes, Mommy. I am so sorry I hurt you." Then he turned away sharply and began hopping and continued with his questions.

For a brief moment, I saw what keeps me connected so tightly with this child. I clearly saw the boy that is locked inside under layers of tangled brain wire, impulses and neurological storms. I heard that boy calling out from underneath it all, telling me that he didn't want to be the way he was and for that, he was sorry.

"You know I love you, Sean. And I am always going to love you. That's why it made me so sad. If I didn't love you so much I wouldn't care. Do you understand?"

He looked up, his eyes unfocused and said, "Duncan's a baby?"

I stayed with him, "You understand, Sean that I love you, right?"

He was looking at the ground, his fingers moving and he said, "Yes. Yes. I love you, Mommy."

That night when I tucked him in he ran his hands over my arm.

"What is that?" he said, over the edges of the scrapes.

"It's from the scratches when you were upset the other day."

He was quiet, I could hear his breathing and he said firmly, "I will never do that again. I won't."

I pulled his covers up, and brushed his mop of hair from his eyes.

"I know you don't want to be like that Sean. You just have to keep working hard, okay?"

With that I kissed him and turned off the light.

A friend, who has a child with autism, said to me once,

"If I was married to somebody who treated me like my son does I would leave him. I wouldn't stay. But he's my son. And he's autistic. What choice do I really have?"

Thinking back to that I realize we do have a choice. We can run and carry our hearts over our heads, protected and safe from being smashed into a thousand tiny shards, or we can make peace with what it is and stay. Like so many parents in similar situations, we grip our hearts with hands of armor and we hold our children with our achy, scratched arms and we love them the best we can, the best we know how. We learn to let go of the darkness, to release grudges and to not take it too personally. We have to search for love and forgiveness and bathe their tired souls in what we can tap into on those particular days. And in the end, we amaze ourselves at our ability to stay steadfast with our love. We don't run, we stay. Everyday we make that choice. To stay and fight for our kids.